First

Meeting

BERLIN 3 October 2008

st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008

INTRODUCTION

Dear colleagues and friends,

In January 2007 the Scientific Board approved for the installation of a sub- committee, dedicated to Pediatric Psycho-Oncology: SIOP PPO, an area of research which was not in the SIOP program yet. In pediatric oncology settings, pediatric , with their science based knowledge, have become vital members of multidisciplinary clinical and research teams, adding specialist knowledge to treatment and research of children with cancer. In pediatric psycho-oncology, active research is being conducted to improve the understanding of the impact of childhood cancer on the patients' well being as well as on that of their family members, within a developmental perspective. In order to incorporate the findings of pediatric psycho-oncology into clinical practice, it is important to make psycho- oncology an active component of cancer treatment, counselling and rehabilitation. Taken this into consideration psycho-oncology is of major importance within the SIOP.

The purpose of the SIOP PPO is to:

1. facilitate the exchange of research data on pediatric psycho-oncology issues 2. to support the integration of these data with current psychological research, theory, and practice 3. to encourage the active incorporation of this psychological knowledge into clinical pediatric oncology practice

During the meeting in Mumbai, the committee was presented but no special time to Pediatric Psycho-Oncology could be dedicated yet. And now during the 40th SIOP meeting here in Berlin, we are proud to present Pediatric Psycho-Oncology on the SIOP Program. We have been given the opportunity to put forward a psycho-oncology symposium which will be held on the topic: Interventions in pediatric psychooncology with invited speakers from the USA. Furthermore they have given us the opportunity to have time and place for a pre-meeting which will be held on Friday 3nd October.

You have responded to our invitation to submit abstracts and show the importance of psycho-oncology. This resulted in more than 100 submissions on the psychosocial topic. It needs to be mentioned that SIOP-PPO related abstracts were also submitted in Palliative Care and Late Effects. The result is important: a large number of posters and also some interesting oral presentation throughout the program.

We thank the Board of the SIOP that they have given us the opportunity to give psycho-oncology a place in the Society. We are looking forward to an exciting meeting in which research and experiences will be exchanged and possibly new collaborations will be started. We hope to continue the SIOP-PPO activities in the future. Looking forward to see you in San Paolo (2009) or Boston (2010).

Martha Grootenhuis, also on behalf of the subcommittee: John Spinetta, Jonathan Hill, Gabi Calaminus and Esther Meijer-vd Bergh

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008

PRE-MEETING

PROGRAM & ABSTRACTS (in order of appearance)

3 October 2008

8.30-17.00

ECC Room 5

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008 PROGRAM PRE-MEETING

8.30- 8.45 Welcome by Martha Grootenhuis (Chair SIOP-PPO) and Gabi Calaminus (Chair SIOP Scientific Committee) 8.45-9.45 Family functioning (Chair: Anne Kazak, USA) 1. Impact of caring for a child with cancer on parent’s quality of life. (Anne Klassen, Canada) 2. Actively provided crisis intervention during 1st year post-diagnosis for parents of children with cancer – a randomized controlled trial (Krister K Boman, Sweden) 3. Improving parental quality of life and patients’ psychosocial adaptation by family- oriented inpatient rehabilitation programs. (Lutz Goldbeck, Germany). 9.45-10.15 Coffee break 10.15-11.30 Abstract selections on Interventions (chair: Martha Grootenhuis, the Netherlands) 1. Psychological intervention in siblings of pediatric cancer patients: a systematic review (Alice Prchal, Switserland). 2. A Group Social Skills Intervention Program for Survivors of Childhood Tumors (Fiona Schulte, Canada) 3. Coaching parents of brain tumour survivors: A pilot study (Annika Lindahl Norberg, Sweden) 4. Positive effects of growth hormone therapy on psychological well-being in Young adults survivors of childhood acute lymphoblastic leukemia (Jaap Huisman, the Netherlands) 5. A specific sibling program on a pediatric hematology-oncology unit (Trui Vercruysse, Belgium) 6. Comparing childhood leukemia treatment before and after introduction of a parental education program in Indonesia (Saskia Mostert, the Netherlands) 11.30-13.00 Lunch Break: “meet and greet” 13.00-14.00 (Chair: Robert Butler, USA) 1. First experiences with a neuropsychological assessment tool (Andreas Wiener, Germany) 2. Neurocognitive (dys)function 20 years after cancer treatment (Ilse Schuitema, the Netherlands) 3. Behavioural effects of dexametazone during the induction therapy for acute lymphoblastic leukaemia (Fransesca Nichelli, Italy) 14.00-15.00 Treatment issues (Chair: Esther Meijer- van den Bergh, the Netherlands) 1. Follow-up care after childhood cancer: survivors’ views of current and alternative models of care (Gisela Michel, UK) 2. Clinical trials: information and awareness of under aged patients (Luisa Massimo, Italy) 3. Stress and burnout in pediatric oncology staff (Suzanne Mukherjee, UK) 15.00-15.30 Tea Break 15.30-16.30 Open Discussion chaired by John Spinetta. SIOP-PPO "assembly"" meeting: discussion about important topics on future conferences and collaboration (feasibility problems and pitfalls within multicentre studies) 16.30 Closing 17.00 Opening Symposium SIOP conference

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008

ABSTRACTS PRE-MEETING

IMPACT OF CARING FOR A CHILD WITH CANCER ON PARENT’S QUALITY OF LIFE

Anne Klassen D.Phil, Associate Professor, Department of Pediatrics McMaster University, Canada

Our program of research concerns understanding factors that may explain why some parents of children with cancer cope well with the stresses of childhood cancer and others do not. This research involves ongoing and proposed studies. Firstly, 411 Canadian parents of children in active treatment for cancer from five pediatric oncology centers in Canada between November 2004 and February 2007 completed a comprehensive survey that included items and scales to measure factors known to be important to understanding the caregiving stress process. In this talk, I will present results that show the extent to which parental quality of life (QOL) is compromised, as well as factors associated with poor QOL. I will also highlight how and in what areas the subgroup of single parents of children with cancer differed from parents in two-parent families. Secondly, our group is currently using a qualitative study design, with constructivist grounded theory as the guiding theoretical orientation, to understand the caregiving experiences of first generation Chinese and South Asian immigrant parents of children with cancer. Immigrants make up an increasing proportion of Canada’s population, yet they have been largely overlooked in caregiving research. Our aims in this research are to understand how immigrant parents of children with cancer describe their experiences of caregiving, to explore special problems or challenges that immigrant parents may face due to issues of language, cultural beliefs, literacy, and ethnicity, and to describe the implications of their experiences for pediatric oncology services, programs, and policy. I will describe our study methodology and present key findings based on the first 26 interviews.

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IMPROVING PARENTAL QUALITY OF LIFE AND PATIENTS’ PSYCHOSOCIAL ADAPTATION BY FAMILY-ORIENTED INPATIENT REHABILITATION PROGRAMS.

Lutz Goldbeck, Germany

Objective Pediatric cancer and its treatment have an impact on the whole family system and are often associated with impaired parental quality of life and with a risk for patients’ maladaptation. In Germany, complete families may participate in comprehensive inpatient rehabilitation programs after the acute treatment phase. We evaluated parental quality of life and patients’ psychosocial adaptation as endpoints of the intervention.

Methods 234 mothers and 160 fathers participated in a multi-modal intervention program at the rehabilitation clinic Tannheim, including comprehensive medical and psychosocial interventions. They filled in the Ulm Quality of Life Inventory for Parents repeatedly at admission to the program, at discharge 4 weeks later and at 6-months follow-up. The behavioral and emotional symptoms of 125 cancer patients were assessed by parent reports using the Strengths and Difficulties Questionnaire (SDQ).

Results Parental caregivers improved significantly in all five quality of life domains between pre and post intervention: physical and daily functioning, satisfaction with the family situation, emotional stability, self-development, and well-being. Improvement of self-development was most prominent. The total difficulties score of the SDQ improved significantly between pre- and post-intervention and reached a similar level as in a healthy comparison group of a recent German child health survey study. The intervention effects persisted partly until the follow-up assessment.

Discussion Family-oriented inpatient rehabilitation programs are a promising strategy to improve parental quality of life and patients’ maladaptation after the termination of the acute treatment phase of the child with cancer. Different endpoints indicating re-adaptation of the family system such as parental, patients’ and healthy siblings’ quality of life, or emotional and behavioral symptoms of patients and of their healthy siblings are discussed regarding their utility for a comprehensive evaluation of the effectiveness of interventions in pediatric psycho-oncology.

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ACTIVELY PROVIDED CRISIS INTERVENTION DURING 1ST YEAR POST-DIAGNOSIS FOR PARENTS OF CHILDREN WITH CANCER – A RANDOMIZED CONTROLLED TRIAL

Krister K Boman, Childhood Cancer Research Unit, Karolinska Institutet, Astrid Lindgren Children’s Hospital, Stockholm, Sweden

Background and aim Implementation of evidence-based psychological interventions for families remains a significant challenge in comprehensive childhood cancer management. Efforts to disseminate and implement working practices are needed to advance efficient family care. We report a randomised controlled intervention trial implementing an actively provided crisis intervention program (CIVP) for parents.

Methods 171 parents of children with newly diagnosed cancer underwent baseline assessment (T1) of illness-specific and generic distress symptoms, and traumatic stress. Participants were randomised to the CIVP, or to the non- CIVP (standard care/control) arm. Follow-up distress assessment was done at end of CIVP (T2), and once later on (T3, not reported here). The intervention was structured and time-limited, and covered a main series, and follow-up booster sessions. Qualified therapists and a flexible individualised method were key elements of the model. It complied with generic crisis-intervention theory and techniques addressing working through, and integration of a psychological trauma.

Results Outcome data from T1 and T2 were received from 141 parents. The majority of CIVP participants rated it as effective and helpful. At T2, program participants (cases) demonstrated significantly higher self-esteem, anxiety, less sleep disturbances, and less depression. Intervention-related distress reduction was significantly greater for cases than controls, verified in a change in self-esteem, depression, physical and psychological distress, overall negative feelings, overall distress, and traumatic stress

Conclusions Early crisis intervention is effective and positively evaluated by parents. When actively offered, and provided by qualified therapists close to first information about diagnosis, it reduces severity of cancer-related distress. Findings evidence the value actively provided professional crisis intervention as part of standard care in paediatric oncology.

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PSYCHOLOGICAL INTERVENTIONS IN SIBLINGS OF PEDIATIRC CANCER PATIENTS: A SYSTEMATIC REVIEW

Alice Prchal, MSc, Markus A. Landolt, PhD, University Children’s Hospital Zurich, Switzerland

Purpose Siblings of pediatric cancer patients have been shown to be at risk for developing emotional, behavioral and social problems. There is a need for psychological interventions for this population. Several researchers have previously documented and evaluated their interventions with siblings. This paper aimed to review the existing reports of psychological interventions with siblings of pediatric cancer patients and to outline future directions.

Methods Research was conducted on several online bibliographic databases. Articles were selected on the basis of predefined criteria. If possible, effect sizes were calculated.

Results Fifteen studies representing eleven different sibling interventions met criteria for inclusion. The reviewed studies included twelve pre-post evaluations and three randomized controlled trials. Intervention settings included three camps, seven groups and one single intervention. Intervention objectives mainly concentrated on enhancement of siblings’ coping and improvement of medical knowledge. In terms of outcome measures most studies focused on variables of psychosocial adjustment. Outcome evaluations revealed significant improvements in siblings’ depression symptomatology, medical knowledge and health related quality of life. Findings with regard to anxiety, behavioral problems, social adjustment, self-esteem and posttraumatic stress symptoms were inconsistent. Depending on outcome variables small to large effect sizes were found. Satisfaction with the intervention was generally high in both siblings and parents. The reviewed studies had several methodological shortcomings including small and heterogeneous samples, lack of control groups, inadequate description of interventions, and not taking into account time since diagnosis.

Conclusion There is tentative evidence that psychological interventions in siblings of childhood cancer patients can effectively reduce psychological maladjustment and improve medical knowledge about cancer. However, the number of studies is small and several methodological shortcomings have to be noted. In future, randomized controlled trials need to be conducted in larger samples to extend the evidence base.

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A GROUP SOCIAL SKILLS INTERVENTION PROGRAM FOR SURVIVORS OF CHILDHOOD BRAIN TUMORS

Fiona Schulte, M.A, Barrera, M., Ph.D, C.Psych, Toronto, Canada

Purpose To evaluate the effects of a social skills group intervention program for child brain tumor survivors and to examine related factors.

Methods Participants were 32 survivors (14 females) aged 8 to 18 years. Medulloblastoma (28%) and astrocytoma (19%) were the main diagnoses. The intervention consisted of 8 2 hour weekly sessions focused on social skills including: friendship making and conflict resolution. Survivors and parents completed measures of social skills (SSRS), Quality of Life (PedsQL) and behavior (CBCL/YSR), at baseline, pre- and post-intervention and 6 months later. Child characteristics and clinical variables were also examined.

Results Based on parent reports significant improvement after intervention for the SSRS assertion, PedsQL total score and CBCL total, and internalizing and social problems subscales. IQ, gender and age were related to intervention effects.

Conclusions Outcomes based on parental reports provide some support for the effectiveness of the intervention program.

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COACHING PARENTS OF BRAIN TUMOUR SURVIVORS: A PILOT STUDY.

Annika Lindahl Norberg PhD, Ingrid van't Hooft, Childhood Cancer Research Unit, Astrid Lindgren Children's Hospital, Stockholm, Sweden

We have previously observed that burnout, i.e. stress-related psychological exhaustion, seems to be more prevalent in parents of young brain tumour survivors than in parents of children with no history of chronic or serious disease. Moreover, this appears to particularly concern the mothers.

In a pilot study involving three children with acquired brain injuries after medulloblastoma we tried out a structured coaching programme for parents, within the scope of a ten weeks' cognitive training programme for the children. For the parents' part, an aim of the coaching was to provide tools to alleviate parenting stress.

The children's training involved daily practice of specific and techniques supervised by a teacher. During the child's training period each parent couple met their coach - a licensed - at five occasions. The coaching was based on cognitive behaviour therapy, and contained psycho-education regarding stress mechanisms, insight into the children's training exercises, and application of the child's new skills in daily life. Viability of the coaching was examined through structured interviews with the parents and observations by the coaches. Before and after the intervention we examined the parents' self-rated burnout symptoms using the Shirom Melamed Burnout Questionnaire.

According to interviews and observations, the combination of child training and parent coaching was practicable. Initial symptoms of burnout were pronounced for the three mothers, but fairly low for the fathers. After training and coaching, both mothers and fathers reported low levels of burnout symptoms. Our findings encourage full scale studies examining whether a combined training and coaching programme can contribute to the alleviation of long-term stress in parents of children with brain injuries after brain tumour.

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POSITIVE EFFECTS OF GROWTH HORMONE THERAPY ON PSYCHOLOGICAL WELL-BEING IN YOUNG ADULT SURVIVORS OF CHILDHOOD ACUTE LYMPHOBLASTIC LEUKAEMIA

Jaap Huisman, Aukema EJ, Deijen JB, Coeverden SCCM van, Kaspers GJL, Pal HJH van der, Delemarre-van de Waal HA

Purpose With increasing numbers of survivors of childhood acute lymphoblastic leukaemia (ALL) the late side effects of the disease and its treatment become more important. Although research into psychosocial functioning of adult survivors is limited, an increase of depressive symptoms and somatic distress has been reported in this group. As growth hormone (GH) deficiency or an impaired GH secretion are frequently found at long-term follow-up in patients treated for childhood ALL, and because some studies in GH deficient adults suggest positive effects of GH treatment for psychological functioning and quality of life, we hypothesized improvement of psychosocial well-being as an effect of GH treatment in a group of young adult survivors of ALL.

Method Twenty young adult survivors of childhood ALL with reduced bone marrow mineral density and/or low IGF-1 (<- 1SD) were invited to be treated with GH. Seventeen started therapy (mean age 24.4±3.3; mean age at diagnosis 6.6±4.0) and 14 completed the 2-year study. Eleven of these 14 survivors did receive prophylactic cranial irradiation during ALL treatment. Psychological functioning was assessed by administering questionnaires. For mood and anxiety the Profile of Mood States (POMS) and Spielberger State-Trait Anxiety Inventory (STAI) were used respectively. Social (in-)adequacy and self-appreciation were assessed with the California Psychological Inventory. Finally a symptom checklist (SCL-90) was used.

Results In our study group we found significantly more mood problems, anxiety and feelings of insufficiency (in relation to population norms) at the start of the study. After 2 years of GH therapy scores on several subscales of the tests were improved significantly, relating to mood, anxiety and feelings of social inadequacy.

Conclusion In a group of adult survivors of childhood ALL we found positive effects of GH treatment on psychological well- being. These results seem to support arguments for the importance of assessment of GH status in survivors of childhood ALL.

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A SPECIFIC SIBLING PROGRAM ON A PEDIATRIC HAEMATOLOGY-ONCOLOGY UNIT

Trui Vercruysse, psychologist in pediatric oncology, Researchgroup psychodiagnostics and psychopathology, University Hospital, Gasthuisbergweg KU Leuven.

Introduction Siblings of seriously ill children have their own needs. The family situation undergoes dramatic changes putting the sibling through stress. The sick child becomes the focus of attention. The sibling may feel lonely and left out. Giving that prevention is better than cure, the implementation of interventions addressing the psychosocial wellbeing of the whole family from the time of diagnosis onward, is an ideal to work towards.

Method A questionnaire (n= 41) filled in by patients, parents and siblings taught us that the families needed activities while the patient was on the ward and during holidays and days off.

Results Since 2005 a specific program aimed to involve the healthy siblings in the treatment process of the sick child, started: - at time of diagnosis, siblings are seen by the psychologists to explain the disease, answer their questions and help them cope with their emotions. - on days off, siblings are welcome in the playroom together with the patients and are looked after by the pedagogical staff. - monthly, they have their own specific “sibling” activity. - once a year, a guided tour is organised across the hospital. All these activities are announced on flyers and through a poster on the ward. Siblings who lost their brother/sister are yearly invited for a mourning workshop given by the psychologists. The number of children participating in the organised activities is increasing: in 2005 n=8, 2006 n=34, 2007 n=77.

Conclusion A specific program dedicated to siblings made them more present on the ward. Parents are more concerned about their healthy children.

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COMPARING CHILDHOOD LEUKEMIA TREATMENT BEFORE AND AFTER INTRODUCTION OF A PARENTAL EDUCATION PROGRAM IN INDONESIA

Saskia Mostert,1 Mei Sitaresmi,2 Chad Gundy,3 Sutaryo,2 and Anjo Veerman1

Background We previously found that access to parental education and donated chemotherapy for 164 childhood acute lymphoblastic leukemia patients diagnosed between 1997 and 2002 in Indonesia was inadequate. The most important reason for treatment failure was treatment refusal or abandonment, which occurred in 47% of 120 poor patients.

Intervention Starting from January 2004, a structured parental education program was introduced in an Indonesian academic hospital to improve access to parental education and donated chemotherapy. The program contained a video-presentation in hospital, information-booklet, audiocassette, procedures for informed- consent, statement of understanding for donated chemotherapy and installation of a complaints-mechanism. Access to donated chemotherapy was improved: 98% of patients received donations, as opposed to 16% in the past.

Objective Our study compared childhood leukemia treatment outcome before (n=164) and after (n=171) introduction of the parental education program.

Methods Medical records of 171 patients diagnosed between 2004 and 2008 were abstracted. Data on treatment results and parental socioeconomic status were collected. Their treatment outcome was compared to those from the 164 patients diagnosed between 1997 and 2002.

Results After introduction of the parental education program significant differences in treatment outcome occurred. A significant decrease in treatment refusal or abandonment was found: 26% of 144 poor patients dropped-out, as opposed to 47% in the past. Treatment-related death as cause of treatment failure increased. Significant differences in event-free survival estimates were found before and after introduction of the parental education program.

Conclusions After introduction of the parental education program also poor families received structured information about leukemia, its treatment and donated chemotherapy. A significant decrease in treatment refusal or abandonment of poor patients occurred. To improve survival it is important that treatment-related death decreases as cause of treatment failure. Improvement of knowledge and skills of health-care providers is required to manage toxicity of treatment.

1 VU University Medical Center, Pediatric Oncology, Amsterdam, the Netherlands 2 Dr Sardjito Hospital, Pediatric Oncology, Yogyakarta, Indonesia 3 Dutch Cancer Institute- Antonie van Leeuwenhoek Hospital, Amsterdam, the Netherlands

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FIRST EXPERIENCES WITH A NEUROPSYCHOLOGICAL ASSESSMENT TOOL

Andreas Wiener, University Hospital of Münster, Department of Pediatric Hematology/Oncology, Münster, Germany

Cancer treatment that target the CNS and their effects on neuropsychological functioning have a significant impact on patients´ lives. Especially pediatric brain tumor (BT) patients suffer from neurocognitive sequelae which often hamper academic achievement. Although information on neurocognitive impact is important to design adapted treatment strategies most of the commonly used assessment batteries demonstrate limited practicability and explanatory power.

To utilise an assessment tool for use within trials of the German HIT-BRAIN TUMOR NETWORK a neuropsychological basic diagnostics (NBD) has been defined. The NBD is based on the Cattell-Horn-Carroll (CHC) theory of intelligence and allows estimation of several independent basic intellectual abilities. For measuring the respective abilities in pediatric patients up to 18 years of age appropriate subtests from various standard (intelligence) tests have been selected. This selection was based upon earlier experiences with the Würzburg Psychological Short Diagnostics/WUEP-SD1 and a multicentre project of the German-Competence- Network-Pediatric-Oncology on late effects in patients treated for ALL/BT2.

The NBD covers the following CHC-factors: fluid intelligence (Test: Raven’s CPM/SPM), crystallized intelligence (WPPSI-III/WISC-III/-IV Vocabulary), visual-constructive intelligence (Beery-VMI), short-time memory (K-ABC-II Number Recall), reaction-time, attention (CPT), and psychomotor performance (Purdue-Pegboard). In patients aged 4 years only the BSID-II/-III is designated (as an indicator for ´g´).

The NBD provides the opportunity to estimate significant cognitive abilities in BT patients by means of high consistent recording systems over pediatric age groups. Since administration takes only about one hour patients´ stress is reduced to a minimum. Beyond the applicability in prospective/retrospective designs within HIT-BT NETWORK, NBD can be used as a screening to objectify individual need for rehabilitative support. First experiences with the NBD suggest a good feasibility in the clinical setting and a broad acceptance by patients.

1 Ottensmeier et al, Kindheit und Entwicklung, 15(2), 2006; 2 Calaminus et al., Pediat Blood Cancer; 43, 2004.

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NEUROCOGNITIVE (DYS)FUNCTION 20 YEARS AFTER CANCER TREATMENT

Ilse Schuitema1,3, Anjo J.P.Veerman1, Cor van den Bos4, Cornelis J. Stam2, Leo M.J. de Sonneville3

Introduction/Objective Central nervous system (CNS)-directed treatment is an essential part of therapy for acute lymphoblastic leukemia (ALL) in children. Cranial irradiation has been proven to be very detrimental to the brain. Mixed results are reported on late effects of CNS-directed chemotherapy and found neurocognitive deficits are usually mild. We aim to describe neurocognitive deficits in the domain 18-29 years after end of treatment for ALL. Neuropsychological sequelae that long after treatment have not been studied yet.

Methods We studied adults that survived ALL in childhood and were treated according to two protocols: DCLSG ALL5 (cranial irradiation plus chemotherapy (CRT+CT), 1979-1984) and DCLSG ALL6 (chemotherapy only (CT-only), 1984-1988). Thirteen ALL5-patients, 24 ALL6-patients and 41 healthy controls (siblings/partners/friends of the patients) were assessed with the Amsterdam Neuropsychological Tasks (ANT) program, structural and functional MRI (n-back task), DTI (diffusion tensor imaging, assessing white matter quality), MEG (magneto- encephalography, assessing connectivity between brain regions) and quality of life questionnaires. Here we focus on the results of the neuropsychological assessment with the ANT.

Preliminary results The group treated with CRT+CT performed statistically significantly worse than controls on the following cognitive domains: sustained attention (slower task pace and more fluctuations in attention), cognitive flexibility (higher error rate and slower task pace) and sequential (higher error rate for correct order). The group treated with CT-only performed as well as controls, except for the sequential working memory task where a trend was found for a higher error rate than controls.

Conclusions Over 20 years after treatment, patients treated with CRT+CT perform worse than controls on sustained attention, cognitive flexibility and sequential working memory. The CT-only group performs as well as controls, except for a mild deficiency in sequential working memory.

Departments of 1Pediatric Hematology-Oncology, and 2Clinical , VU University Medical Center, Amsterdam, 3Dept. Clinical Child and Adolescent Studies, Leiden University, 4Dept. Pediatric Oncology, Academic Medical Center, Amsterdam

Corresponding author: Ilse Schuitema, MSc., research neuropsychologist, Leiden University Work address: Department of Pediatric Hematology-Oncology, VU University Medical Center, De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands. Tel: +31204440878. Mobile: +31629058118. E-mail: [email protected]

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BEHAVIOURAL EFFECTS OF DEXAMETAZONE DURING THE INDUCTION THERAPY FOR ACUTE LYMPHOBLASTIC LEUKEMIA

Francesca Nichelli, Pozzi L. and Jankovic M. on behalf of Psychosocial Committee of AIEOP (Italian Association of Pediatric Hematology and Oncology)*

Background The aim of this research was the assessment of behavioural toxicity in a randomized study (PDN vs. DXM) during Induction therapy for ALL in children, in order to possibly give supportive therapies (as anxiolitic or antidepressant drugs), without negative interference with chemotherapy.

Methods A prospective study with repeated measures was conducted in 230 children affected by ALL, aged between 1,5 and 18 years, enrolled in the ALL AIEOP 2000 protocols in 12 different Italian Pediatric Centers. CBCL (Child Behaviour Checklist) was administered in 3 different times: T1 (before I random), T2 (after 15 days from the random), T3 (after 1 month and accordingly 7-10 days before the consolidation phase).

Results 1) In each test timing we observed a significantly high percentage of children who obtained pathological scores in many of subscales of CBCL, both for those treated with PDN and DXM 2) In the PDN group the average scores within the normal values in all administration timing were obtained 3) Higher scores in DXM group, compared to PDN group, in Total Problem Scale (P < 0.05), in Internalizing Scale (P < 0.05) and in particular in the Anxious / Depressed Scale (P < 0.05) were observed. Scores were pathological only in stage T2, with the exception of anxious/depressed scale that remained pathological in T3 also 4) Higher scores in younger children, compared to the oldest ones in the aggressive behaviour scale (P < 0.01) were obtained.

Conclusion Our results suggest the existence of a greater number of behavioral disturbances in children treated with DXM, more evident in youngest ones (less than 5 years old), almost exclusively in stage T2 and the need for a specific supportive therapy.

*Pediatric centers Referring person

Roma C. Baronci Padova S. Varotto Napoli M. Giuliano Firenze A. Lippi Modena M. Cellini Torino E. Barisone Bologna L. Lautizi Catania C. Favara Genova D. Caprino Catanzaro C. Consarino Cagliari R. Mura

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FOLLOW-UP CARE AFTER CHILDHOOD CANCER: SURVIVORS’ VIEWS OF CURRENT AND ALTERNATIVE MODELS OF CARE

Gisela Michel 1, Absolom K1, Greenfield DM2, Eiser C1, on behalf of the Late Effects Group Sheffield

Background Long-term follow-up (FU) for survivors of childhood cancer is often recommended given prevalence of physical and psychological late-effects, but survivors may differ in extent to which they themselves perceive importance.

Aims Determine 1) survivors’ views about the purpose of FU. 2) acceptability of different FU models.

Method 112 survivors (18-45 years), treated for childhood cancer (<16 years) and >2 years post-treatment completed questionnaires to assess reasons for attending FU-care, clinical (e.g. detect relapse) or supportive (e.g. provide information), number of late effects and perceived future vulnerability, quality of life (SF-12) and preferred model of FU. Medical information was extracted from case notes.

Results 109 survivors were receiving regular consultant-led FU. Survivors rated clinical reasons more highly than supportive reasons (t=10.97; df=111; p<0.001) independently of either demographic or medical variables. Those who endorsed supportive reasons reported more late effects (r=0.20; p=0.04) and higher future vulnerability (r=0.40; p<0.001). Poorer physical and mental health were associated with higher endorsement of clinical (r=0.20; p=0.04) and supportive reasons (r=0.27; p=0.005) respectively. Consultant-led model of follow- up was preferable to nurse, GP or telephone-/questionnaire-based FU (F=32.06; df=3; p<0.001).

Conclusion Survivors were aware of future vulnerability but may be falsely reassured by the likelihood of planned FU to detect relapse or late effects. However, supportive aspects for attending FU were highly valued. A FU strategy should recognise survivors’ continuing need for psychosocial support, regardless of their individual risk of late effects.

1 Dept of , University of Sheffield, Western Bank, Sheffield, S10 2TP, UK 2Academic Unit of Clinical Oncology, Weston Park Hospital, Sheffield S10 2SJ, UK

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CLINICAL TRIALS: INFORMATION AND AWARENESS OF UNDERAGED PATIENTS.

Luisa M. Massimo1, A. Pistorio2

Most adolescents and young adults being treated for leukemia and cancer express a desire or need for information about their illness, treatment, long-term effects, as well as about family counseling, sexuality and intimacy. They often demand detailed explanations to help them understand better. Their needs may differ according to age and gender, but they always involve psychology. Physicians must look at these many problems from the patient's viewpoint in order to provide truly total therapy and care to their young cancer patients. In order to achieve good coping and adjustment, this must include careful of resources, supportive care programs and services, together with a psychosocial assessment of the whole family. The main aim of our research is to evaluate the degree of awareness of under-age patients from 11 to 18 years of age with regards to experimental trials. It is made up of a semi-structured interview including 12 simple questions given by a trained psychologist (a copy is included). A second objective could be to evaluate any variables collected during the interviews. Efficacy parameters are as follows: a score of 0 or 1 is given items 3,5,6,10,11,12, while a score from 0 to 4 is assigned to items 2,7,8,9. The total may reach a maximum of 21 points for awareness, and a minimum of 0. A sufficient degree might be = or >12, corresponding to 57% of the total score. Informed consent must be obtained from the parents/tutors prior to the interview.

1 2 Department of Pediatric Hematology and Oncology, Epidemiology and Biostatistics Unit, G. Gaslini Children’s Research Hospital, Genova, Italy.

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STRESS AND BURNOUT IN PEDIATRIC AND ADOLESCENT ONCOLOGY STAFF: PAST, PRESENT AND FUTURE RESEARCH

Suzanne Mukherjee, Bryony Beresford, Patricia Sloper and Adam Glaser, Social Policy Research Unit, University of York, United Kingdom

Research on adult oncology staff indicates that they are at risk of experiencing burnout and psychiatric morbidity, with some evidence of a rise in recent years. These findings have implications for sickness absence, job retention, and quality of care to patients. Whether or not these findings can be generalised to staff working in pediatric oncology is questionable since the needs of children are different from adults, as are the skills required by staff who care for them. In addition, children experience different malignancies and more dose- intensive therapies.

A recent review of the literature on stress and burnout in pediatric and adolescent oncology staff revealed that the research evidence on this topic is very limited, consisting predominantly of exploratory research on the stressors experienced by nursing staff and one study of psychiatric morbidity among nurses. There is, therefore, a need for further research on this topic among pediatric oncology staff, and this requires a measure of work-related stressors so that factors which increase the risk for burnout and psychiatric difficulties can be understood.

In January 2009, a research team at the University of York will begin a project funded by Cancer Research UK to develop a measure of work-related stressors experienced by staff working in multi-disciplinary pediatric oncology teams (doctors, nurses, social workers, play specialists and youth workers). No such tool currently exists. In addition to being useful for future research investigating stress and burnout in pediatric oncology staff, such a measure could be used to facilitate early identification of, and interventions for, staff at risk of burnout and psychiatric difficulties. The purpose of this presentation is to discuss the research evidence on stress and burnout, the new study, and the direction of future research in this area.

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SYMPOSIUM

PROGRAM & ABSTRACTS (in order of appearance)

5 October 2008

14.00-15.30

Hall D

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008 PROGRAM

SYMPOSIUM S10: INTERVENTIONS IN PEDIATRIC PSYCHO-ONCOLOGY Sunday October 5, 2008, from 14.00 to 15.30. Room: Hall D. Chair: Dr. M.A. Grootenhuis, (SIOP-PPO)

Timing Speaker

14.00-14.05 Chair Opening symposium

14.05-14.30 Anne Kazak Evidence based psychosocial care in pediatric oncology: Achievements and challenges

14.30-14.55 Robert Butler A Clinical Trial of Cognitive Remediation with Childhood Cancer Survivors

14.55-15.10 Louise von-Essen Treatment of posttraumatic stress among parents of children with cancer with cognitive behavioural therapy over the Internet

15.10-15.25 Bob Last A cognitive-behavioral based group intervention to empower children and teenagers treated for cancer

15.25-15.30 Chair Closing remarks

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008 ABSTRACTS

EVIDENCE-BASED PSYCHOSOCIAL CARE IN PEDIATRIC ONCOLOGY: ACHIEVEMENTS AND CHALLENGES

Anne E. Kazak, Ph.D., ABPP, The University of Pennsylvania and The Children’s Hospital of Philadelphia, Philadelphia, PA.

Purpose Evidence-based practice is recognized as critical to the delivery of high quality care in medicine as well as in psychosocial assessment and intervention. Although psychosocial care is recognized as integral to comprehensive care for youth with cancer and their families and evidence-based approaches are available, there are persistent inconsistencies in the delivery and evaluation of psychosocial services in pediatric oncology.

Method This presentation will provide a background summary of evidence-based psychosocial intervention in pediatric oncology, addressing broader issues related to the identification and implementation of evidence-based practice. Using a public health model – The Pediatric Preventative Psychosocial Model (PPPHM) – three tiers of psychosocial risk in the pediatric oncology setting will be introduced, along with recognized intervention approaches consistent with each level.

Results A blueprint for the provision of psychosocial services, across time and levels of risk will be outlined. Selected assessment and intervention approaches will be highlighted based on work from our laboratory and including the Psychosocial Assessment Tool (PAT) and an intervention model that integrates cognitive behavioral and family therapy treatment approaches – Surviving Cancer Competently Intervention Program (SCCIP).

Conclusions Consistencies in challenges experienced worldwide in developing evidence-based psychosocial approaches in pediatric oncology will be discussed. The presentation will conclude with opportunities for further translating psychosocial research into practice and developing models of multidisciplinary collaboration to support their sustenance.

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A CLINICAL TRIAL OF COGNITIVE REMEDIATION WITH CHILDHOOD CANCER SURVIVORS

Robert Butler, Oregon Health Sciences University, Oregon, United States

Purpose The nature of neurocognitive deficits in survivors of childhood cancer whose malignancy and/or treatment included the Central Nervous System has been well documented over the past three decades. The most common underlying neurocognitive deficits in this population appear to involve impairment in sustained attention/concentration, decreased information processing speed and efficacy, and difficulties in working memory. Surprisingly little research and clinical work, however, has been directed towards treatments for these underlying neurocognitive deficits. Outpatient brain injury rehabilitation in North America has largely become the responsibility of the public education system; whereas in the past it was predominantly directed by health professionals such as physiatrists, neurologists, and neuropsychologist in addition to other related professions such as speech pathology, occupational therapy and social work. This presentation will describe the development of a cognitive remediation program (CRP) directed towards improving attention/concentration, processing speed, memory, and other cognitive and behavioral deficits in the pediatric CNS malignancy/treatment population.

Method The evolution of the CRP has been progressive and programmatic, and is now a tripartite model. The model involves a unique combination of three intertwined approaches: (1) Traditional brain injury rehabilitation techniques, which includes instructing children and adolescents in specific memory strategies designed to improve functioning in this area, and also efforts to improve information processing speed; (2) Instruction in metacognitive strategies; and (3) A therapeutic approach that involves cognitive-behavioral interventions. The CRP has two key aspects. First, while it is individualized therapy, a team approach is advocated. Second, the intervention is both programmatic and individualized. A set number of treatment sessions are prescribed, and expected goals are identified over the course of the CRP. While programmatic, other clinical issues that may arise over the course of treatment become a focus for therapy. Following a brief description of the CRP, results of a multi-institutional, phase III clinical trial comparing the CRP to a waitlist control condition will be presented. This clinical trial was conducted at seven institutions across the United States, and 161 individuals were enrolled into the trial.

Results Children/adolescents who were off treatment for a CNS related malignancy and demonstrated a deficit in attention/concentration experienced a highly significant improvement in academic achievement when compared to control participants. The effect size of this improvement was 0.53.

Conclusion We are now modifying the intervention in order to increase its potency and effectiveness. This new direction involves providing caregivers with a direct intervention, and also increasing their involvement in the actual delivery of the CRP.

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TREATMENT OF POSTTRAUMATIC STRESS DISORDER AMONG PARENTS OF CHILDREN WITH CANCER WITH COGNITIVE BEHAVIOURAL THERAPY OVER THE INTERNET

Prof. Louise von Essen, Institutionen för folkhälso- och vårdvetenskap Enheten för vårdvetenskap Uppsala Universitet, Sweden

Purpose that one’s child has a life-threatening illness is, according to the DSM-IV (4th ed), a stressor that can precipitate posttraumatic stress disorder (PTSD). Additionally, most parents of children with cancer are exposed to other potentially traumatic events. A fourth of Swedish parents (N=259) have reported PTSD during their child’s treatment whereas 14% have reported PTSD twelve months after end of treatment as measured with the PCL-C. The figures should be compared to a lifetime PTSD prevalence of 6% (PCL-C) in the general Swedish population. A Swedish study on treatment of PTSD among parents of children with cancer with cognitive behavioural therapy (CBT) over the Internet will be presented at the 40th SIOP Congress in Berlin. The overall aim is to, among parents of children with cancer, evaluate the clinical efficacy and cost- effectiveness of an Internet-based CBT treatment for PTSD. Another aim is to evaluate the effect of the treatment when initiated six weeks vs. seventeen months after the child’s diagnosis.

Method Parents will, from January 2009, be included at all six Swedish centres for pediatric oncology. One hundred parents who score as potential cases of PTSD on the PCL-C, but do not suffer from any psychiatric disorder in immediate need of treatment, will, five weeks after the child’s diagnosis, be randomly assigned to an Internet- based CBT treatment initiated either six weeks or seventeen months after the child’s diagnosis. Self-reports of PTSD, general anxiety, depression, health-related quality of life and health-economic consequences will be provided over the Internet shortly before, shortly after and twelve months after each treatment. In connection to each assessment a clinical global impression of the parent will be made over the telephone. The treatment will be performed by cognitive behavioural therapists, last approximately ten weeks and employ a web-based manual with weekly therapist contact by e-mail. It will be divided into ten modules and will mainly consist of imaginal exposure methods. The modules will be accessible via the World Wide Web using encrypted homepages and anonymous encrypted e-mail. Each module will include information, exercises, and essay questions.

Results The first results will be available in 2010.

Conclusions The study will reveal whether it is clinically effective and cost-effective to treat PTSD among parents of children with cancer with CBT over the Internet. The findings will also reveal the effectiveness of starting this treatment approximately six weeks vs. seventeen months after the child’s diagnosis. Considering that there is an association between the distress experienced by parents of children with cancer and the children’s psychological adjustment the findings may not only be of immediate benefit for the parents but also for the children with cancer as well as their siblings.

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A COGNITIVE-BEHAVIORAL BASED GROUP INTERVENTION TO EMPOWER CHILDREN AND TEENAGERS TREATED FOR CANCER

Prof. Dr. Bob F. Last, Stam H., Grootenhuis MA. Emma Children’s Hospital, Amsterdam Medical Center, the Netherlands

Purpose Growing up with a history of childhood cancer means for the child and his family to manage various stressors related to uncertainty and uncontrollability of the situation, and possibly also restriction of freedom to act due to adverse physical consequences of the disease. Children use different coping strategies for dealing with stressors in relation to their illness or treatment. Dependent on the stressor the selected coping strategy will be effective in terms of adjustment. Considering the adverse effects of many treatments, the uncertainty about the further course of the disease and other psychosocial implications of childhood cancer, there is need for interventions aimed at empowerment for survivors of childhood cancer. To determine the usefulness of a cognitive-behavioral group intervention for children with cancer the effectiveness was studied.

Method Based on principles from cognitive behavior therapy and information from previous research about children’s experiences with coping with a serious chronic disease we developed an intervention for children and adolescents treated for cancer. Within this program, called Op Koers (OK), with 6 sessions for different age groups, specific sub-programs were composed for children aged 8-12 years and for teenagers with cancer in the age of 12-18 years. Participants are trained in information seeking and information giving about the disease. In a session with an oncologist questions about cancer treatment and late effects are discussed. Relaxation is practised during the sessions as well as at home. Social competence is enhanced by role-playing (younger children) and by group discussion (teenagers) with special attention to feelings of being different as a result of the disease. Positive thinking is encouraged through identifying and correcting negative and discourage negative self-talk. The group intervention was evaluated in two studies, using standardized and researcher-developed psychological measures. In study 1 (n=20, 12-18 yrs)outcome scores 0 -6 weeks (T1) and half a year (T2) after the intervention were compared with baseline outcome scores by means of dependent sample T-tests and Wilcoxon signed ranks tests. In study 2 (n=11, 8-12 yrs) scores were dichotomised in a positive and negative category. Subsequently we labelled and counted the changes between TO and T1.

Results In both studies improvements were found in behavioral-emotional outcomes, social competence, information seeking, relaxation and positive thinking. Additionally, the sessions received positive appraisals.

Conclusion The program appears to have a significant and positive impact on children with cancer. Further research is needed to establish the effects of the intervention.

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SIOP-PPO GUIDE

Where to find PSYCHO-ONCOLOGY related subjects on the SIOP conference

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st Contact and Abstractbook 1 SIOPPPO meeting Berlin 2008 SATURDAY OCTOBER 4th

FREE PAPERS LATE EFFECTS 1: 10.30-12.00 (ECC HALL C) Chairs: P.A. Kurkure, India & T. Lange, Germany

O.033: PERSISTENT HEALTH -RELATED AND FUNCTIONAL LATE EFFECTS IN ADULT SURVIVORS AFTER CHILDHOOD CNS TUMOUR AND TREATMENT. A NATION –WIDE COHORT STUDY: Krister K Boman, Emma Hoven, Malin Anclair, Birgitta Lannering, Göran Gustafsson, Sweden O.034: OF MEDICAL PROBLEMS. YOUNG ADULT CHILDHOOD CANCER SURVIVORS AND THEIR HEALTHCARE PROVIDERS: Lisa Schwartz, Claire Carlson, Jill Ginsberg, Wendy Hobbie, Jun Mao, Sue Ogle, Mary Rourke, Branlyn Werba, Anne Kazak United States O.035: PRIMARY CARE PROVIDER CONTINUITY AMONG SURVIVORS OF CHILDHOOD CANCER IN BRITISH COLUMBIA, CANADA: Hedden Lindsay, Sam Sheps, Maria Lorenzi, Anne-Marie Broemeling, Mary McBride Canada

NURSES I. CHILD AND FAMILY EXPERIENCES ALONG THE CANCER JOURNEY: 10.30-12.30 (ECC HALL A) Chairs: F. Gibson, U.K. & K. Huerst, Germany

NO.001: LIVING WITH CHILDHOOD CANCER - FAMILY MEMBERS‘ EXPERIENCES AND NEEDS: Maria Björk, Berit Nordström, Thomas Wiebe, Inger Hallström Sweden NO.002: CANCER CHILDHOODS. ANALYSIS OF DATA FROM AN ETHNOGRAPHIC STUDY OF CHILDHOOD CANCER IN BRITISH BANGLADESHI CHILDREN: Paula Kelly U.K. NO.003: STRUGLING ON. EXPERIENCES OF FOREIGN-BORN PARENT S IN CHILDHOOD CANCER CARE: Pernilla Pergert, Solvig Ekblad, Olle Björk, Karin Enskär, Tom Andrews Sweden, Ireland NO.004: THE EXPERIENCE OF FAMILIE S WHO‘S CHILD RECEIVED AN HEMATOPOIETIC STEM CELS TRANSPLANTATION: Marie-France Vachon, Irene Leboeuf, Melissa Laroche, Genevieve Mercier, France Dupuis, Michel Duval, Martin A. Champagne NO.005: THE PROCESS OF RELINQUISHING. PARENTAL STRUGLE BETWEEN LOSS AND PRESERVATION OF THEIR CHILD RECEIVING PALLIATIVE CARE: Marijke Kars, Mieke Grypdonck, Ria Korte-Verhoef, Hans van Delden NO.006: EVALUATION OF SUPORT GROUPS FOR BROTHERS AND SISTERS OF CHILDREN WITH CANCER: Margaretha Nolbris, Anna-Lena Hellström, Karin Enskär, Jonas Abrahamsson, Lisa Olofsson, Sweden

FREE PAPERS LATE EFFECTS 2: 14.00-15.30 (ESTRELL HALL B) Chairs: M. Jankovich, Italy & L. Hjorth, Sweden

O.053: EDUCATIONAL LATE EFFECTS AMONG SURVIVORS OF CHILDHOOD CANCER IN BRITISH COLUMBIA: A CAYACS STUDY: Mary McBride, Amy McMillan, Linda Siegel, Bruno Zumbo, Maria Lorenzi, Karen Goddard Canada O.054: PROSPECTIVE STUDY OF CNS-TOXICITY AND HEALTH RELATED QUALITY OF LIFE IN ALL PATIENTS: Marios Paulides, Jörn-Dirk Beck, Joanna Peeters, Thorsten Langer Germany O.055: PSYCHOLOGICAL DISTRESS IN LONG-TERM SURVIVORS OF CHILDHOOD CANCER IN SWITZERLAND: Gisela Michel, Cornelia E. Rebholz, Nicolas X. von der Weid, Eva Bergstraesser, Claudia E. Kuehn, United kingdom O.056: LONGITUDINAL ASSESSMENT OF HEALTH-RELATED QUALITY OF LIFE IN CHILDREN WITH NON-CNS CANCER AFTER THE END OF SUCCESSFUL TREATMENT: Heleen Maurice-Stam, Bob Last, Martha Grootenhuis, Netherlands

FREE PAPERS SUPPORTIVE CARE 1: 17.00-17.30 (ECC ROOM 5) Chairs: M. van de Wetering, Netherlands & B. Agarwal, India

O.080: 18.15-18.30 QUALITY OF LIFE OF CHILDREN TREATED FOR CEREBELLAR TUMOURS AND A HEALTHY COMPARISON GROUP: REPORT ON BEHALF OF THE CCLG OF THE FIRST ASSESSMENT: Colin Kennedy, Kim Bull, United kingdom

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SUNDAY OCTOBER 5th

Plenary Session S7: Infant Brain Tumours: 10.30-12.00 (ECC Hall D) S.028 Late effects and quality of survival: J. Grill France

POSTER VIEWING II: 13-14 HOURS Posters of Disciplines: Epidemiology: E001-E035 Supportive Care: G001-G028 Imaging: I001-I005 PODC: J001-J040 Psychosocial: K001-K056 Late Effects: L001-L042 Radiation Oncology: M001-M009 Palliative Care: Q001-Q008 Adolescent and Young Adult Oncology: S001-S015 Others: T001-T020

S10: PLENAIR SESSION: INTERVENTIONS IN PAEDIATRIC PSYCHO-ONCOLOGY (ECC HALL D: 14-15.30) Chair: M. Grootenhuis, Netherlands

S.037 EVIDENCE-BASED PSYCHOSOCIAL CARE IN PEDIATRIC ONCOLOGY: ACHIEVEMENTS AND CHALLENGES: Anne Kazak, United States S.038 A CLINICAL TRIAL OF COGNITIVE REMEDIATION WITH CHILDHOOD CANCER SURVIVORS: R. Butler, United States S.039 TREATMENT OF POSTTRAUMATIC STRESS DISORDER AMONG PARENTS OF CHILDREN WITH CANCER WITH COGNITIVE BEHAVIOURAL THERAPY OVER THE INTERNET: Louise Von Essen, Sweden S.040 A COGNITIVE-BEHAVIORAL BASED GROUP INTERVENTION TO EMPOWER CHILDREN AND TEENAGERS TREATED FOR CANCER: Bob F. Last, Heleen Maurice-Stam, Martha Grootenhuis, Netherlands

MONDAY OCTOBER 6th

BEST POSTER DISCUSSION II (14-15.30: HALL A+ D) Chairs: K. Matthay, U.S. & J. Poole, South Africa

Discussion of selected posters of disciplines. E – Epidemiology G – Supportive Care I – Imaging J – PODC K – Psychosocial L – Late Effects M – Radiation Oncology Q – Palliative Care S – Adolescent and Young Adult Oncology T – Others

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WHO IS WHO

IN

PEDIATRIC PSYCHO-ONCOLOGY (in alphabetical order)

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Last Name Aarsen First Name Femke Title Msc Degrees Msc Contact information Erasmusmc/Sophia Children’s Hospital PO box 2060 3000 CB Rotterdam The Netherlands Email address [email protected] Profession Pediatric Neuropsychologist Function Clinical Neuropsychlogist Main activities Patient Care, Research and Education Focus of research Neuropsychology Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Cognitive Functions and NF 1 (2005-2008) 2. Cerebellar Pilocytic Astrocytoma and Cognitive functioning (2003-2010) 3. Cognitive Functioning in survivors of sepsis (2005-2008) 4. Cognitive Functioning in MPS children treated with enzymtherapy (2003-present) 5. Cognitive Functioning in Pompe children treated with enzymtherapy (2003-present) 6. Cognitive Functioning in children with MS (2007-present) 7. Cognitive Functioning in children with CSWS (2003-present) Key publications (max 5) Catsman-Berrevoets CE, Van Dongen, HR, Aarsen FK, Paquier PP. Transient cerebellar eye closure and mutism after cerebellar tumor surgery: long-term clinical follow-up of neurologic and behavioral disturbances in a 14-year-old girl. Pediatr Neurosurg. 2003 Mar;38(3):122-7. Aarsen FK, Van Dongen HR, Paquier PP, Van Mourik M, Catsman-Berrevoets CE. Long-term sequelae in children after cerebellar astrocytoma surgery. . 2004 Apr 27;62(8):1311-6. Aarsen FK, Paquier PP, Reddingius RR, Streng IC, Arts WFM, Evera-Preesman M, Catsman-Berrevoets CE. Functional outcome after low-grade astrocytoma treatment in childhood. Cancer. 2006 Jan 15;106(2):396-402. Aarsen FK, Van den Akker EL, Drop SL, Catman-Berrevoets CE. Effect of topiramate on cognition in obese children. Neurology. 2006 Oct 10;67(7):1307-8. Krab LC, Aarsen FK, De Goede-Bolder A, Catsman-Berrevoets CE, Arts WFM, Moll HA, Elgersma Y. Impact of Neurofibromatosis Type 1 on School Performance. J Child Neurol (in press)

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Last Name Ambler First Name Cheryl Title Clinical Psychologist specializing in Neuropsychology Degrees Ph.D. Contact information 20370 Town Center Lane, Suite 168 Cupertino California USA Email address [email protected] Profession Neuropsychological Assessment Function Assessment, Support for children with cancer, siblings, parents Main activities Assessment; Research with Lucile Packard Children’s Hospital at Stanford, Some treatment Focus of research Late effects of children with cancer Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Beginning projects with Eisai research on use of Arecept with children treated with chemotherapy and radiation; 2. Children’s Oncology Group Neuropsychological, Social, Emotional and Behavioral Outcomes in Children with Cancer Key publications (max 5) None

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Last Name Armstrong First Name Daniel Title Professor & Associate Chair, Dept. of Pediatrics: Director, Mailman Center for Child Development; and Director, University of Miami Sickle Cell Center, University of Miami Miller School of Medicine; and Associate Chief of Staff, Holtz Children’s Hospital at UM/Jackson Memorial Medical Center Degrees Ph.D. Contact information P.O. Box 016820 (D-820), Miami, FL 33101 Email address [email protected] Profession Academic Medical Center Faculty, Pediatric Psychologist Function Senior Department & Hospital Leadership; Center Director & Research Program Director/PI Main activities Patient Care (5%); Research (70%), Training (5%) Administration (20%) Focus of research Neurodevelopmental late effects (outcomes, mechanisms, intervention) in childhood cancer, sickle cell disease, and HIV; health-related quality of life Attending SIOP Berlin 2008 No Research projects (duration and start date) FUNDED PROJECTS ONLY 1. PI: Kassam-Adams, N. (Children’s Hospital of Philadelphia), Armstrong, F.D. (University of Miami Site PI. Validating a child acute stress measure in English and Spanish. 4/1/07-3/31/11 2. PI: Reaman, G. (Armstrong, F.D., Co-PI, Naomi Winick, Co-PI). Children’s Oncology Group Chair’s Grant, Methotrexate Supplement. 1/1/06-12/31/11. 3. PI: Armstrong, F.D. (2006). National Children’s Cancer Society. Childhood cancer cognitive late effects: Just-in-time training for teachers. (6/06-10/08) 4. PI: Armstrong, F.D, Briery B, Co-Investigator. “Assessing Implementation and Effectiveness of IEPs for Children with Cancer” American Cancer Society). 1/1/03-12/31/08. 5. PI: Armstrong, F.D. Prevention of neurocognitive deficits in children with chronic illness. Micah Batchelor Award for Excellence in Children’s Health Research. Funding Period: 11/1/05-10/31/010. Key publications (max 5) Ris, M.D., Beebe, D.W., Armstrong, F.D., Fontanesi, J., Mulhern, R.K., Holmes, E., & Wisoff, J.H. (In press). Cognitive and adaptive outcome in extracerebellar low grade brain tumors in children from a national collaborative study (CCG 9891/POG 9130): A report from the Children’s Oncology Group. Journal of Clinical Oncology. Nathan, P.C., Patel, S., Dilley, K., Goldsby, R., Harvey, J., Jacobsen, C., Kadan-Lottick, N., McKinley, K., Millham, A.K., Moore, I., Okcu, M.F., Woodman, C.L., Brouwers, P., & Armstrong, F.D. (2007). Neurocognitive and Behavioral Problems in Survivors of Childhood Cancer: Guidelines for Identification, Advocacy and Intervention. Archives of Pediatrics and Adolescent Medicine, 161 (8), 798-806. Armstrong, F.D. (2006). Neurodevelopment and chronic illness: Mechanisms of disease and treatment. Mental Retardation and Developmental Disabilities Research Reviews, 12, 168-173. Beebe, D.W., Ris, M.D., Armstrong, F.D., Fontanesi, J., Mulhern, R.K., Holmes, E., & Wisoff (2005). Cognitive and adaptive outcome in low-grade pediatric cerebellar astrocytomas: Evidence of increased risk in national collaborative research studies (CCG 9891/POG9130). Journal of Clinical Oncology, 22, 5198-5204. Armstrong, F.D. & Reaman, G.H. (2005). Psychological research in childhood cancer: The Children’s Oncology Group perspective. Journal of Pediatric Psychology, 30, 89-97.

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Last Name Aukema First Name Eline J Title Miss Degrees MSc Contact information Psychosocial Department, G8-224 Emma Children’s Hospital/ Academic Medical Center Meibergdreef 9 1105 AZ Amsterdam The Netherlands Telephone: 0031-20-5665670 Email address [email protected] Profession Psychologist Function Ph. D. Student Main activities Clinical practice and research Focus of research Brain tumors; Late effects; Neurocognitive consequences; Quality of life; Survivors and parents; Interventions Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. 2006-2010: Late consequences and needs of young survivors of a brain tumor and their parents. Key publications (max 5) Aukema, Last, Schouten-van Meeteren and Grootenhuis. Alertness, psycho-education, anticipation of school and support in search for the appropriate care is necessary to meet the needs of brain tumor survivors and their parents (submitted). Aukema, Caan, Oudhuis, Majoie, Vos, Reneman, Last, Grootenhuis and Schouten- van Meeteren. White matter Fractional Anisotropy Correlates with Speed of Processing and Motor Speed in Young Childhood Cancer Survivors. Int J of Radiation Oncology Biology Physics (in press) Huisman, Aukema, Deijen, Coeverden van, Kaspers, Pal van der and. Delemarre-van de Waal. The usefulness of growth hormone treatment for psychological status in young adult survivors of childhood leukaemia: an open-label study. BMC Pediatrics 2008.

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Last Name Van Baalen First Name Manita Title Degrees Contact information ErasmusMC-Sophia, LATERpoli kamer Sb 1635, Postbus 2060, 3000CB Rotterdam Email address [email protected] Profession Function Coordinator Late Effects Outpatient clinic Main activities Patient Care and Research Focus of research Late Effects after childhood cancer Attending SIOP Berlin 2008 NO Research projects (duration and start date) Key publications (max 5)

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Last Name Barrera First Name Maru (Maria) Title Senior Associate Scientist, Research Institute, Sick Kids, Toronto; Associate Professor, University of Toronto, Toronto, Ontario, Canada Degrees MA, PhD Contact information Dept. of Psychology Sick Kids Toronto Ontario Canada Email address [email protected] Profession psychologist Function Clinician, researcher, professor Main activities Patient Care; Research, Both Focus of research Psychosocial and quality of life outcomes of pediatric cancer treatment, including bone marrow and stem cell transplantation; psychosocial intervention for siblings, children with brain tumors and bereaved siblings and parents; parental bereavement; psychosocial late effects of childhood cancer Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Friendship, family adjustment and grief in siblings and parents after cancer death; site PI, 4 of 5 yrs; 2. Friendship and family adjustment to treatment of pediatric brain tumors; site PI, last of 3 years; 3. Social skills intervention with children treated for brain tumors; PI; first of three years; 4. Hope, the complex journey of parents of children with cancer; co-PI, last of three years; 5. Group intervention for bereaved siblings; applying for additional funding; 6. Group intervention for siblings of children with cancer; applying for additional funding; 7. Recent projects finished on: health promotion and longitudinal psychosocial outcomes in children who undergo bone marrow or stem cell transplantation; quality of life and psychosocial long term outcomes of survivors of childhood bone cancer Key publications (max 5) Barrera, M., D'Agostino, N., Schneiderman, G., Tallett, S., and Spencer, L. (2007). Parental Bereavement after the Loss of a Child. Omega, 55 (2), 149-171. Barrera, M. Andrews, G., Burnes, D. & Atenafu, E. (2008) Age differences in perceived social support by pediatric hematopoietic progenitor cell transplant patients: A longitudinal study. Child: Care, Health & Development. 34 (1), 19-24. Barrera, M. Andrews, G., Saunders, F., & Atenafu, E. ( 2008) Factors related to changes in cognitive, academic and visual motor integration in children who undergo hematopoietic progenitor cell transplant., Journal of Pediatric Psychology. 33 (5) 536-546. Barrera, M., Schulte, F., & Spiegler, B. (2008) Factors influencing depressive symptoms of children treated for a brain tumor. Journal of Psychosocial Oncology, 26 (1), 1-16. D’Agostino, N. Berlin-Romalis, D., Jovcevska, V. & Barrera, M. (2008) Bereaved parents’ perspectives on their needs, Palliative and Supportive Care, 6, 33-41. Barrera, M & Atenafu, E. (2008) Cognitive, educational, psychosocial adjustment and Quality of life of children who survive hematopoietic stem cell transplant and their siblings. Journal of Bone Marrow Transplant, Advance online access, doi:10 1017/S1478951508000060.

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Last Name Beck First Name Joern D. Title Prof. Dr med. Degrees Pediatric hematooncology, Somatopsychotherapy Contact information LESS study center University of Erlangen, Germany Email address [email protected] Profession Pediatric hematooncologist, Somatopsychotherapist Function Senior advisor for the LESS study center Main activities Late effects after cancer therapy,LESS Focus of research Late effects after cancer therapy Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Late effects after cancer therapy,LESS Key publications (max 5) Beck, J.D, Winkler K, Niethammer D, Brandis M, Hertzberg, H, von der Hardt K, Greil J, Rossi R, Lamprechts-Dinnesen A, Brämswig J, Kaatsch P, Michaelis J, Meier W, Hausdorf G, Bielack S, Dörr HG, .: Die Nachsorge der von einer Krebserkrankung geheilten Kindern und jugendlichen Erwachsenen. Erste Empfehlungen der Arbeitsgemeinschaft SpätfolgenKlin. Pädiatr. 207: 186-192 (1995) Überall, M. Wenzel, D, Hertzberg, H., Langer, T., Meier, W., Dopfer, R., Skalej, M., Lackner, H., Bode, U., Janssen, G., Zintl, F., Beck, J.D. : Neurophysiological findings in long term survivors of acute lymphoblastic leukemia in childhood treated with the BFM protocol 81 SR-A/B Eur. J. Pediatr. 156: 727- 733 (1997) Langer,T., Henze, G., Beck, J.D.: Basic methods and the developing structure of a late effects surveillance system (LESS) in Germany. For the German Late Effects Study Group in the Society of Pediatric Oncology and Hematology Med Pediatr Oncol 34:348-351.2000 Stöhr, W., Paulides, M., Bielack, S., Jürgens, H., Treuner, J., Rossi, R., Langer, T., Beck, J., D.: Ifosfamide – induced nephrotoxicity in593 sarcoma patients: A report from the Late Effects Surveillance System. Pediatr Blood Canc 48: 447-452, 2007 Paulides, M, Dörr, HG., Stöhr W, Bielack S, Koscielniak E, Klingebiel T, Jürgens H, Bölling T, Schuck A, Willich N, Sauer R, Langer T, Beck JD, : Thyroid function in pediatric and young adult patients after sarcoma therapy: A report from the Late Effects Surveillance System Clinical Endocrinology 66: 727- 731, 2007

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Last Name Ben Arush First Name Myriam Weyl Title Associate Professor Degrees M.D Contact information Meyer Children's Hospital Rambam Health Care Campus Associate Professor in Pediatrics Technion Faculty of Medicine Haifa 31096, Israel Email address [email protected] Profession Pediatric oncologist Function Head of the Pediatric Hematology Oncology department, Chairman of the Israel Society of Pediatric Hematology Oncology Main activities Brain tumors, sarcomas, long term survivors. Research in angiogenesis Focus of research Palliative care, long term survivors, Making decision, communication, ethics, informed consent Attending SIOP Berlin 2008 Yes, but from 4th Research projects (duration and start date) 1. Quality of life of children receiving chemotherapy and their siblings at the same time. Key publications (max 5) Postovsky S, Moaed B, Krivoy E, Ofir R, Ben Arush MW. Practice of palliative sedation in children with brain tumors and sarcomas at the end of life. Pediatr Hematol Oncol. 2007 Sep;24(6):409-15 Postovsky S, Levenzon A, Ofir R, Ben Arush MW. "Do not resuscitate" orders among children with solid tumors at the end of life. Pediatr Hematol Oncol. 2004 Oct-Nov;21(7):661-8. Jankovic M, Spinetta JJ, Martins AG, Pession A, Sullivan M, D'Angio GJ, Eden T, Ben Arush MW, X S, Punkko LR, Epelman C, Masera G; SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Non-conventional therapies in childhood cancer: guidelines for distinguishing non-harmful from harmful therapies: a report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Pediatr Blood Cancer. 2004 Jan;42(1):106-8. Postovsky S, Ben Arush MW. Care of a child dying of cancer: the role of the palliative care team in pediatric oncology. Pediatr Hematol Oncol. 2004 Jan-Feb;21(1):67-76 Haimi M, Peretz Nahum M, Ben Arush MW. Delay in diagnosis of children with cancer: a retrospective study of 315 children. Pediatr Hematol Oncol. 2004 Jan-Feb;21(1):37-48

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Last Name Beek First Name Laura Title Drs Degrees Psychology Contact information Email address [email protected] Profession Psychologist Function Psychologist at Wilhelmina Children’s Hospital (UMCU Netherlands) Main activities Patient care and research Focus of research Quality of life of families and their children with a brain tumor Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. In preparation 2009-2013 Key publications (max 5)

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Last Name Benko First Name Marta Title Professor of psychology Degrees Professor of psychology Contact information Children’s hospital Zagreb, Oncology department Klaiceva 16 10000 Zagreb Croatia +385914600117 Email address [email protected], [email protected] Profession Psychologist Function Master’s degree student Main activities Patient Care and Research Focus of research Children, adolescents and parents – health and (interventions, stress events, quality of life, anxiety, postoperative outcomes, neurocognitive, etc.) Attending SIOP Berlin 2008 Yes Research projects (duration and start date) Key publications (max 5) Benko, M., Horvat, M. & Bago-Blecic, M. (2004). Postoperative Behavioral Outcomes in Children Undergoing Tonsillectomy: Effects of Sedative Premedication. Acta Anaesthesiologica Croatica,1:7,24-25.

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Last Name Ben-Gal First Name Yael Title Head Nurse of Hemato - Oncology patient car department Degrees M.A. Contact information Schneider Children’s Medical Center of Israel Tel Aviv University Petach Tikva Israel Email address [email protected] Profession head nurse Function project leader Main activities in charged and work in patient care and also research. Focus of research adolescent’s parents’ palliative care. Attending SIOP Berlin 2008 yes. Research projects (duration and start date) 1. New families- needs and expectation and staff intervention. 2. End of life patient’s teem - prepare the patient, the family and the staff – action and intervention, 3. Future project –sexuality in adolescents with cancer- what are the nurses’ opinion? Key publications (max 5)

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Last Name Bernabeu First Name Jordi Title Degrees Professor, Psyd Contact information Pediatric Oncology Unit La Fe Hospital Campanar 21 46009 Valencia Spain Email address [email protected] Profession Pediatric Neuropsychologist Function Neuropsychological assessment and rehabilitation Main activities Patient Care; Research, Both Focus of research Long-term sequelae of oncological treatments Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Incidence of pediatric brain injury. Institutions: Spanish Federation of acquired brain injuries and University Hospital La Fe. Duration: 2007-2009, IP: Jordi Bernabeu Verdu 2. Neuropsychological rehabilitation program in child and adolescent survivors of CNS neoplasm and leukemia. Institutions: FMAP – Mapfre Fundation. Duration: 2005-2006, IP: Adela Cañete 3. Neurocognitive rehabilitation Institution: Euroworld (European Federal Bank). Duration: 2003-2005, IP: Castel, V 4. Neuropsychological assessment in children with intracranial tumors and leukemia: design of educational interventions. Institution: IVAQE Valencian Institute of educational assessment and quality Duration: 2004-2004, IP: Jordi Bernabeu Key publications (max 5) Jordi Bernabeu, Concepción Fournier, Adela Cañete. Chapter: Evalución y rehabilitación neuropsicológica en oncología. Book: Manual de psicooncología. Editorial: Síntesis. 2008 Orellana C., Bernabeu J., Monfort S., Roselló M., Oltra S., Ferrer I., Quiroga R., Martínez-Garay I., Martínez F. Duplication of the Williams-Beuren critical region:case report and further delineation of the phenotypic spectrum. Journal of Medical Genetics. Vol 45 (3) 187-189, 2008 Patricia Yi, Pilar Barreto, Carmen Soler, Miguel Fombuena, Victoria Espinar, Lorenzo Pascual, Ramón Navarro, Remedio González, Jordi Bernabeu, Jesús Suárez. Grief support provided to caregivers of palliative care patients in Spain. Palliative Medicine. Vol 20 521-531, 2006 Bernabeu, J; López-Luengo, B; Fournier, C; Cañete, A; Suárez, J.M; Castel, V. Aplicación del APT (Attention Process Training) dentro de un proyecto de intervención en procesos atencionales en niños con cancer. Revista de Neurologia. Vol 38 (5) 482-486, 2004 Bernabeu, J; Cañete, A; Fournier, C; Lopez-Luengo, B; Barahona, A; Grau-Rubio, C; Tortola, A; Badal, MD; Alvarez-Garijo, JA; Suarez, JM; Castel, V. Evaluación y rehabilitación neuropsicológica en oncología pediátrica. revista de psicooncologia. Vol 0 (1) 117-134, 2003

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Last Name Boman First Name Krister K Title Assoc professor Degrees PhD Contact information Childhood Cancer Research Unit, Karolinska Institutet, Department of Woman and Child Health. Astrid Lindgren Children's Hospital, 17176 Stockholm, Sweden Email address [email protected] Profession Research psychologist Function Senior researcher, project leader Main activities Research Focus of research Patient and family psychological adjustment in childhood cancer. Supportive crisis intervention for parents of children with cancer. Tumour and treatment related psychological and functional adverse lat-effects in patient treated for pediatric CNS tumours. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Parental psychosocial consequences after a child’s cancer; started 1998; ongoing longitudinal follow- up. 2. Crisis intervention for parents of children with newly diagnosed cancer, started 2003, in phase of reporting (intervention research). 3. Adverse long-term late-effects of illness and treatment in pediatric CNS tumour patients; longitudinal follow-up, started 2006, ongoing longitudinal several-years’ project Key publications (max 5) Boman KK, Bodegård G. Life after cancer in childhood: Social adjustment and educational and vocational status of young-adult survivors. J Pediatr Hematol Oncol, 2004. 26(6): p. 354-362. Boman KK, Viksten J, Kogner P, Samuelsson U. Serious illness in childhood: The different threats of cancer and diabetes from a parent perspective. J Pediatr 2004;145:373-9. Boman K, Kogner P, Björk O. Psychological supportive intervention for parents in pediatric oncology. In: S. Malhotra (Ed.), Mental Health and Disorders in Children and Adolescents. Need and Strategies for Intervention (pp. 207-214). 2005. New Delhi: CBS Publishers. Lindahl Norberg A, Boman KK. Parent distress in childhood cancer: A comparative evaluation of posttraumatic stress, depression and anxiety. Acta Oncol, 2008. 47(2): p. 267-274. Hjern A., Lindblad F, Boman KK. Disability in adult survivors of childhood cancer - a Swedish national cohort study. J Clin Oncol, 2007. 25(33): p. 5262-6.

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Last Name Bomans First Name An Title Psychologist Degrees University Contact information UZ Gent 1K5 De Pintelaan 185 9000 Gent Belgium Email address [email protected] Profession Psychologist Function clinical psychologist Main activities Patient Care Focus of research Adolescents; children, parents; siblings, palliative and postpalliative care Attending SIOP Berlin 2008 NO Research projects (duration and start date) Key publications (max 5)

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Last Name Brouwers First Name Pim Title Associate Director, Infant, Child, & Adolescent Research Programs Degrees Drs, PhD Contact information National Institute of Mental Health Bethesda Maryland USA Email address [email protected] Profession Pediatric Neuropsychologist Function Supervisor, project leader Main activities Research Focus of research Neurobehavioral late effects Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Genetic factors that determine risk for late neurobehavioral effects (ongoing; start 2000) Key publications (max 5) Brouwers P, Riccardi R, Poplack D, & Fedio, P.: Attentional deficits in long-term survivors of childhood acute lymphoblastic leukemia (ALL). Journal of Clinical Neuropsychology 6: 325-336, 1984 Jankovic M, Brouwers P, Valsecchi MG, v Veldhuizen A, Huisman J, Kamphuis R, Kingma A, Mor W, van Dongen-Melman J, Ferronato L, Mancini MA, Spinetta JJ. Negative late effects of 1800 cGy cranial irradiation on intellectual function in children with acute lymphoblastic leukemia: A multicenter European study. Lancet, 1994, 344:224-227 Brouwers P. Study of the Neurobehavioral Consequences of Childhood Cancer; Entering the Genomic Era? Journal of Pediatric Psychology, 2005, 30:79-84. Nathan PC, Whitcomb T, Wolters PM, Steinberg SM, Balis FM, Brouwers P, Hunsberger S, Bleyer WA, Feusner J, Sather H, Miser J, Odom LF, Poplack DG, Reaman G. Very high-dose methotrexate (33.6 g/m2) as CNS preventive therapy for childhood ALL: Results of collaborative National Cancer Institute/Children’s Cancer Group trials CCG-191P, CCG-134P, and CCG-144P. Leukemia & Lymphoma, 2006, 47:2488-2504. Krull KR, Brouwers P, Jain N, Zhang L, Bomgaars L, Dreyer Z, Mahoney D, Bottomley S, Okcu MF: Folate Pathway Genetic Polymorphisms are Related to Attention Disorders in Childhood Leukemia Survivors. Journal of Pediatrics. 2008, 152(1):101-105.

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Last Name Bonner First Name Melanie Title Associate Professor Degrees PhD Contact information Box 3527, DUMC Durham NC 27710 USA Email address [email protected] Profession Clinical Psychology (Pediatric Psychology) Function Professor, Researcher, Clinician Main activities Both Focus of research Survivorship; cognitive functioning; caregiver issues Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Deficits in Facial Expression Recognition in Childhood Cancer Survivors. To quantify and profile childhood cancer survivors’ facial recognition deficits using objective standardized methodology (Responsive Virtual Human Technology). 1R03 CA128472-01 (Bonner), 07/01/07 – 06/30/09, NIH/NCI 2. TRICCS: Targeting Inattention in Childhood Cancer Survivors. To evaluate the feasibility and acceptability of a home-based, computerized working memory training program for childhood cancer survivors. 1R03 CA 132570-01 (Hardy/Bonner), 09/30/07 – 08/31/09, NIH/NCI, Role: Co-Investigator Key publications (max 5) Bonner, M.J., Hardy, K.K., Willard, V.W., Anthony, K.K., Hood, M.A., & Gururangan, S. (in press). Social functioning and facial expression recognition in survivors of pediatric brain tumors. Journal of Pediatric Psychology. Hardy, K.K., Bonner, M.J., Willard, V.W., Watral, M.A., & Gururangan, S. (in press). Brief Report: Hydrocephalus as a possible additional contributor to cognitive outcome in survivors of pediatric medulloblastoma. Psycho-Oncology. Hutchinson, K.C., Willard, V.W., Hardy, K.K., & Bonner, M.J. (in press). Adjustment of caregivers of pediatric patients with brain tumors: A cross-sectional analysis. Psycho-Oncology. Bonner, M.J., Hardy, K.K., Willard, V.W., & Gururangan S. (in press). Additional evidence of a Nonverbal (NLD) in survivors of pediatric brain tumors. Children’s Health Care. Bonner, M.J., Hardy, K.K., Willard, V.W., & Hutchinson, K.C. (2007). Brief Report: Psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Journal of Pediatric Psychology, 32, 851-856.

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Last Name Buizer First Name Annemieke Title Dr. Degrees MD PhD Contact information Dept Rehabilitation, VU University Medical Center, PO Box 7057, 1007 MB Amsterdam, The Netherlands Email address [email protected] Profession Physician Function Resident rehabilitation medicine Main activities Patient Care and Research Focus of research Neurocognitive outcome after childhood cancer Attending SIOP Berlin 2008 Yes 1. Research projects (duration and start date) 2. Neurotoxicity of cancer treatment: neurocognitive 3. dysfunction and underlying mechanisms (Start 2006) Key publications (max 5) Buizer AI, De Sonneville LM, van den Heuvel-Eibrink MM, Njiokiktjien C, Veerman AJ. Visuomotor control in survivors of childhood acute lymphoblastic leukaemia treated with chemotherapy only. J Int Neuropsychol Soc. 11, nr 5, 2005, pp 554-65. Buizer AI, de Sonneville LM, van den Heuvel-Eibrink MM, Veerman AJ. Chemotherapy and attentional dysfunction in survivors of childhood acute lymphoblastic leukemia: effect of treatment intensity. Pediatr Blood Cancer. 45, nr 3, 2005, pp 281-90. Buizer AI, de Sonneville LM, van den Heuvel-Eibrink MM, Veerman AJ. Behavioral and educational limitations after chemotherapy for childhood acute lymphoblastic leukemia or Wilms tumor. Cancer 106, nr 9, 2006, pp 2067-2075.

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Last Name Bull First Name Kim Title Mrs Degrees BSc (Hons), MSc Contact information Dept. University Child Health, MP803G, Centre Block, G level, Southampton General Hospital, Southampton, SO16 6YD, United Kingdom Email address [email protected] Profession Psychology Function Senior Research Assistant and PhD student Main activities Research Focus of research Quality of life of children treated for brain tumours Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. PNET4 Outcome study - from about 2000 until at least 2010. 2. In depth study of factors affecting quality of life after treatment of posterior fossa brain tumour 2005- 2010. 3. In preparation. Single outcome study for all children enrolled in brain tumour studies. Key publications (max 5) Bull, K. and Kennedy, C. (2008). A longitudinal study of the quality of life of children treated for a medulloblastoma or a low-grade cerebellar astrocytoma compared with healthy controls: Report of cross-sectional data at the first assessment. Neuro-Oncology, 10, 474-474. Bull, K.S., Spoudeas, H., Yadegarfar, G. and Kennedy, C.R. (2007). Reduction of health status seven years after addition of chemotherapy to cranio-spinal irradiation for medulloblastoma: follow-up study of SIOP PNET 3 trial survivors on behalf of the CCLG (formerly UKCCSG). The Journal of Clinical Oncology, 25, 4239-4245. Bull, K., Kennedy, C. and the United Kingdom Children’s Cancer Study Group (2006). Effect of neo- adjuvant chemotherapy on long-term neurological function, health state, behaviour, and quality of life in the PNET3 randomized controlled trial of treatment for primitive neuro-ectodermal tumour. Developmental medicine and Child Neurology, 48, 37-37. Kennedy, C., Bull, K. and the United Kingdom Children's Cancer Study Group (2004). Effect of neo- adjuvant chemotherapy on long-term health state and behaviour in the PNET3 RCT of treatment for primitive neuroectodermal tumour (PNET). Neuro-Oncology, 6, 460-460.

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Last Name Butler First Name Robert Title Associate Professor Degrees PhD Contact information Department of Pediatrics Division of Pediatric Hematology/Oncology (CDRCP) Oregon Health & Science University 3181 SW Sam Jackson Park Rd. Portland, OR 97239-3098 (503) 494-4033 Email address [email protected] Profession Associate professor in Pediatrics, Neurology and Psychiatry Function Associate professor in Pediatrics, Neurology and Psychiatry Main activities Clinical neuropsychology Focus of research Brain injury rehabilitation, psychological adjustment, neurocognitive assessment Attending SIOP Berlin 2008 Yes Research projects (duration and start date) Numerous in the above areas Key publications (max 5) 1. Butler, R.W. & Copeland, D.R. (2002). Attentional processes and their remediation in children treated for cancer: A literature review and the development of a therapeutic approach. Journal of the International Neuropsychological Society, 8, 115-124. 2. Mulhern, R.K. & Butler, R.W. (2004). Neurocognitive sequelae of childhood cancers and their treatment. Pediatric Rehabilitation, 7, 1-14. 3. Butler, R.W. & Mulhern, R.K. (2005). Neurocognitive interventions for children and adolescents surviving cancer. Journal of Pediatric Psychology, 30, 65-78. 4. Sahler, O.J., Fairclough, D.L., Phipps, S., Mulhern, R.K., Dolgin, M.J., Noll, R.B., Katz, E.R., Varni, J. W., Copeland, D.R., & Butler, R.W. (2005). Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: report of a multi-site randomized trial. Journal of Consulting and Clinical Psychology, 73, 272-283. 5. Butler, R.W., Copeland, D.R., Fairclough, D.R., Mulhern, R.K., Katz, E., Kazak, A.E., Noll, R., Patel, S., Sahler, O.J. (in press). A Multi-Center, Randomized, Clinical Trial of a Cognitive Remediation Program For Childhood Survivors of a Pediatric Malignancy. Journal of Consulting and Clinical Psychology.

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Last Name Calaminus First Name Gabriele Title MD Degrees Contact information University Children’s Hospital, Münster, Dep.of Ped.Hematology and Oncology, Email address [email protected] Profession Pediatric Hematologist, -Onologist, Neurooncology Function Chair QoL Unit Münster, Chair of German Pediatric Oncology Germ Cell Tumor trials, Chair SC Committee SIOP Main activities Patient Care; Research, Both Focus of research QoL, QoS in brain tumors and other solid tumors, psychooncological aspects in adolescents Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. About 20 research projects on Qol/QoS in different pediatric oncological disease groups, 2 BMBF networkactivities Key publications (max 5) Calaminus G, Barr R. Economic evaluation and health-related quality of life. Pediatr Blood Cancer. 2008 May;50(5 Suppl):1112-5. Review. Haupt R, Spinetta JJ, Ban I, Barr RD, Beck JD, Byrne J, Calaminus G, Coenen E, Chesler M, D'Angio GJ, Eiser C, Feldges A, Gibson F, Lackner H, Masera G, Massimo L, Magyarosy E, Otten J, Reaman G, Valsecchi MG, Veerman AJ, Penn A, Thorvildsen A, van den Bos C, Jankovic M; International Berlin- Frankfurt-Münster Study Group Early and Late Toxicity Educational Committee (I-BFM-SG ELTEC). Long term survivors of childhood cancer: cure and care. The Erice statement. Eur J Cancer. 2007 Aug;43(12):1778-80. Calaminus G, Kaatsch P. [Position paper of the Society of Pediatric Oncology and Hematology (GPOH) on (long-term) surveillance, (long-term) follow-up and late effect evaluation in pediatric oncology patients] Klin Padiatr. 2007 May-Jun;219(3):173-8. German. Calaminus G, Weinspach S, Teske C, Göbel U. Quality of survival in children and adolescents after treatment for childhood cancer: the influence of reported late effects on health related quality of life. Klin Padiatr. 2007 May-Jun;219(3):152-7. Müller HL, Albanese A, Calaminus G, Hargrave D, Garré ML, Gebhardt F, Saran F, Sörensen N, .Spoudeas HA Consensus and Perspectives on Treatment Strategies in Childhood Craniopharyngioma: Results of a Meeting of the Craniopharyngeoma Study Group (SIOP), Genova, 2004; JPEM 2006; Vol 19 Supplement 1:453-454

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Last Name Cañete First Name Adela Title MD Degrees MD, PhD Contact information Unidad de Oncologia Pediatrica Hospital Infantil la Fe Avda campanar 21 46009 Valencia Spain Email address [email protected] Profession Physician Function Attending Physician in a pediatric oncology unit Main activities Patient Care; Research, Both Focus of research CNS tumors, neuropsychological sequelae and rehabilitation, survivors, neuroblastoma Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Health status in pediatric cancer survivors: study on cardiovascular risk, neuropsychological sequelae and second cancers. Three years. 2008. Key publications (max 5) Cañete A, Navarro S, Bermudez J et al:“Angiogenesis in neuroblastoma: relationship to survival and other prognostic factors in a cohort of neuroblastoma patients”. J Clin Oncol 2000; 18(1): 27-34. Castel V, Cañete A et al: “Results of the Cooperative Protocol (N-III-95) for metastatic relapses and refractory neuroblastoma”. Med Ped Oncol 2000; 35(6): 724-726. Castel V, Cañete A, Navarro S y cols.:“ Outcome of high-risk neuroblastoma using a dose-intensity approach: improvement in initial but not in long-term results”. Med Pediatr Oncol 2001; 37: 537-542. Noguera R, Cañete A, Pellin A, Ruiz A, Tasso M, Navarro S, Castel V, Llombart-Bosch A.MycN gain and MycN amplification in a stage 4s neuroblastoma. Cancer Genetics and Cytogenetics 2003; 140: 157- 161. Cañete A, Gerrard M,Rubie H y cols.: “Poor Survival for Infants With MYCN-Amplified Metastatic Neuroblastoma Despite Intensified Treatment: The International Society of Pediatric Oncology European Neuroblastoma Experience”. J Clin Oncol 26(19), 2008 (in press).

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Last Name Catsman-Berrevoets First Name Coriene Title Dr. Degrees Md.PhD Contact information Dept Pediatric Neurology Erasmus MC/Sophia Children Hospital Dr Molewaterplein 60 3015 GJ Rotterdam The Netherlands Email address [email protected] Profession Pediatric neurologist Function idem Main activities Patient Care; Research, Both Focus of research Cognitive and neurological complications of brain tumor treatment in children and young adults Attending SIOP Berlin 2008 Yes/ Research projects (duration and start date) 1. Posterior Fossa syndrome after cerebellar tumor surgery 2. Cognitive sequelae of brain tumor treatment 3. Quality of life after brain tumor treatment Key publications (max 5) Paquier PF, Van Mourik M, Van Dongen H, Catsman-Berrevoets CE. Le mutisme cérébelleux avec dysarthrie subséquente. In Les Dysarthries, Auzou P, Rolland-Monnoury V, Pinto S, Özsancak C, eds. Solal 2007. Aarsen FK, Paquier Ph.F, Reddingius RE, Streng IC, Arts WFM, Evera-Preesman, Catsman-Berrevoets CE. Functional outcome after low-grade astrocytoma treament in childhood. Cancer 2006;106:396-402. Aarsen FK, van Dongen HR, Paquier PF, van Mourik M, Catsman-Berrevoets CE Long term sequelae in children after cerebellar astrocytoma surgery. Neurology 2004;62:1311-16. Catsman-Berrevoets CE, Van Dongen HR, Mulder PGH, Paz y Geuze D, Paquier PF, Lequin MH. Tumour type and size are high risk factors for the syndrome of “cerebellar”mutism and subsequent dysarthria. J.Neurol. Neurosurg. Psychiat. 1999;67:755-7. Catsman-Berrevoets CE, Van Dongen HR, Mulder PGH. Incidence and risk factors for the syndrome of ‘cerebellar’ mutism and subsequent dysarthria. A prospective study. Brain Dev. 1998;20:344.

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Last Name Colte First Name Paul Title Pediatric and Child Clinical Psychologist Degrees Psy.D. Contact information Primary Children’s Medical Center Division of Pediatric Hematology/Oncology/Bone Marrow Transplant 100 North Mario Capecchi Drive Salt Lake City, Utah 84113 Email address [email protected] (801) 662-4552 Profession Psychologist Function Attending Psychologist- Neuropsych assessment and consultation liaison. Main activities Patient Care and generate data for COG protocols. Focus of research Generate data for COG protocols. Attending SIOP Berlin 2008 No Research projects (duration and start date) None Key publications (max 5) None

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Last Name Darlington First Name Anne-Sophie Title Dr Degrees PhD in psychology Contact information Department of Medical Psychology and Psychotherapy Erasmus MC Dr. Molewaterplein 50 3015 GE Rotterdam The Netherlands Email address [email protected] Profession Psychologist Function Senior researcher, project leader Main activities Research Focus of research Intervention, parents, palliative care, siblings, quality of life Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Training for Parents of Children with Newly Diagnosed Cancer: a Randomised Controlled Trial, 2005- 2011 2. Palliative care for children with cancer: quality of care and long-term outcomes of bereaved parents. 2007-2008 3. Quality of life, psychosocial adjustment and health outcomes after losing a sibling to childhood cancer: the forgotten bereaved. Submitted 4. Quality of life of children with cancer in the palliative fase: instrument development and longitudinal assessment. In preparation Key publications (max 5) Darlington AS, van den Heuvel-Eibrink MM, Passchier J. Ethical considerations of research on children in pediatric palliative care. Lancet 2008;371:2169. Gutteling JJ, Darlington AS, Janssen HL, Duivenvoorden HJ, Busschbach JJ, de Man RA. Effectiveness of health-related quality-of-life measurement in clinical practice: a prospective, randomized controlled trial in patients with chronic liver disease and their physicians. Quality of Life Research 2008 17:195- 205. Tillmann V, Darlington AS, Eiser C, Bishop NJ, Davies HA. Male sex and low physical activity are associated with reduced spine bone mineral density in survivors of childhood acute lymphoblastic leukemia. Journal of Bone and Mineral Research 2002;17:1073-80. C Eiser, ASE Darlington, CB Stride and RJ Grimer, Quality of life implications as a consequence of surgery: limb salvage, primary and secondary amputation. Sarcoma 2001;5:189–195.

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Last Name Dessens First Name Arianne Title Dr. Degrees PhD, Clinical psychologist, behavioral therapist Contact information P.o. Box 2060, room Sp 3435 NL - 3000 CB Rotterdam Email address [email protected] Profession Clinical psychologist Function Clinical psychologist Main activities Patient Care 70%; Research 30% Focus of research Children and adolescents, behavioral and emotional sequelae after diagnosis and treatment for brain tumors (neuro-oncology), quality of life Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Emotional and behavioural problems in children and adolescents treated for brain tumors Key publications Behavioural and emotional sequelae in children after diagnosis and treatment for brain tumors (abstract SIOP). No other publications on pediatric oncology

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Last Name Drotar First Name Dennis Title Professor, Director of Center for Treatment Adherence Degrees Ph.D. Contact information Department of Pediatrics Cincinnati Children’s Hospital Medical Center 3333 Burnet Avenue Cincinnati, OH 45229-3039 Phone 513.636-3936 Fax 513.803.0415 Email address [email protected] Profession Psychologist Function Researcher Main activities Both Focus of research Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. intervention to promote adherence to treatment in adolescents with leukemia 6/1/07 – 5/31/12 Key publications (max 5) Kodish, E., Eder, M., Ruccione, K., Lange, B., Angiolillo, A., Pentz, R., Zyzanski, S., Siminoff, L., & Drotar, D. (2004). Communication of randomization in childhood leukemia trials. Journal of the American Medical Association, 291, 470-75. Drotar, D., Miller, V., Willard, V., Anthony, K., & Kodish, E. (2004). Correlates of parental participation during informed consent for randomized clinical trials in the treatment of childhood leukemia. Ethics and Behavior, 14, 1-15.3. Schwartz, L., & Drotar, D. (2006). Posttraumatic stress and related impairment in survivors of childhood cancer in early adulthood compared to healthy peers. Journal of Pediatric Psychology, 31, 356-366. Peterson, C.C., & Drotar, D. (2006). Family impact of neurodevelopmental late effects in survivors of pediatric cancer: Review of research, clinical evidence, and future directions. Clinical Child Psychology and Psychiatry, 11, 349-366. Pai, A.L.H., Drotar, D., Zebracki, K., Moore, M., & Youngstrom, E. (2006). A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment. Journal of Pediatric Psychology, 31, 978-988.

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Last Name Dijk, van First Name Elisabeth M. (Alice) Title MA Degrees MA Contact information VU University Medical Center Dept. of Medical Psychology P.O. Box 7057 1007 MB Amsterdam The Netherlands Tel. +31 20 4440861 Fax +31 20 4440851 Email address [email protected] Profession clinical psychologist/psychotherapist Function pediatric psychologist/Ph.D. student Main activities Both patient care and research Focus of research Interventions, late effects, psychosexual functioning, quality of life, children, adolescents and survivors Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Psychosexual functioning of childhood cancer survivors 2004-2007; future research in this area is in preparation. 2. A combined physical exercise and psychosocial training program to improve physical fitness in children with cancer. Submitted, estimated start fall 2008. Key publications (max 5) Van Dijk, EM, Huisman, J, Van Dulmen-den Broeder, E, Van Dam EWCM, Kaspers GJL. Psychosexual development of survivors of childhood cancer (abstract). Pediatric Blood and Cancer 47 (4): 397-398, 2006 Van Dijk, EM, Van Dulmen-Den Broeder, E, Kaspers, GJL, Van Dam, EWCM, Braam, KI, Huisman J. Psychosexual functioning of childhood cancer survivors. Psycho-oncology 17 (5): 506-511, 2008. Van Dijk, EM, Van Dulmen-Den Broeder, E, Braam, KI, Kramer, MHH, Kaspers, GJL, Huisman, J. Surviving childhood cancer, but what about psychosexual functioning? Poster presentation at the International Conference Long-Term Complications of Treatment of Children and Adolescents for Cancer, Niagara- on-the-Lake, Canada, 2008. Van Dijk, EM, Van Dulmen-Den Broeder, E, Veening, MA, Kaspers, GJL, Huisman, J. Routine psychological care is useful for survivors of childhood cancer (abstract). Submitted and accepted for poster presentation at SIOP 2008.

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Last Name Dijk, van First Name Jennifer Title Mrs Degrees MSc. Contact information Department of Medical Psychology and Department of Ophthalmology VU University Medical Center P.O. Box 7057 1007 MB Amsterdam, the Netherlands Tel: +31 20 444 0861, Fax: +31 20 444 0851. Email address [email protected] Profession Psychologist Function PhD student Main activities Patient care and research (thesis) Focus of research retinoblastoma; children; adults; parents; quality of life; late effects; psychosocial functioning; coping. Attending SIOP Berlin 2008 yes Research projects (duration and start date) 1. Quality of life and psychosocial functioning of retinoblastoma survivors in the Netherlands: 2004-2008. Key publications (max 5) Van Dijk J, Imhof SM, Moll AC, Ringens PJ, Cohen-Kettenis PT, Rijmen F, Huisman J. Quality of life of adult retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes. 2007 Jun 4;5:30. Van Dijk J, Huisman J, Moll AC, Schouten-van Meeteren AYN, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes. 2007 Dec 3;5:65. Van Dijk J, Oostrom KJ, Imhof SM, Moll AC, Schouten-van Meeteren AYN, Bezemer PG, Huisman J. Behavioural functioning of retinoblastoma survivors. Psychooncology 2008 Jul 9, in press Van Dijk J, Grootenhuis MA, Imhof SM, Cohen-Kettenis PT, Moll AC, Huisman J. Coping strategies of retinoblastoma survivors in relation to behavioural problems. Submitted. Van Dijk J, Oostrom KJ, Huisman J, Moll AC, Cohen-Kettenis PT, Ringens PJ, Imhof SM. Restrictions in daily life after retinoblastoma from the perspective of the survivors. Submitted

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Last Name Eden First Name Tim Title Professor Degrees MB BS, (Obst) RCOG,MRCP (UK), FRCP (Edin), FRCP (London), FRC Path (By Publications), FRCPCH (Founding Member), FRCR (By Publications) Contact information TCT Young Oncology Unit, Christie Hospital Wilmslow Road Withington Manchester M20 4BX United Kinkgdom Email address [email protected] Profession Pediatric and Adolescent Oncologist Function Professor Main activities Patient Care; Research, Both Focus of research Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Treatment non adherence in teenagers and young adult cancer patients: retrospective and prospective study 2007 – 2009. 2. Delays in diagnosis and along the pathway in teenagers and young adults with cancer: An objective analysis of symptom interval in the North West region of the UK 2005 onwards as part of the TCT Chair Programme. 3. Qualitative study of patient pathway experiences Lead researchers Faith Gibson, Susie Pierce, Danny Kelly 4 centre study Southampton, London, Leeds, Manchester. PI for Manchester T Eden. 4. Clinical trial coordination and management specifically acute lymphoblastic leukaemia trials since 1979 including impact of dexamethasone on long term functioning. 5. Gene environment interactions in causation and response to therapy for childhood and adolescent oncology. A local and national collaboration on epidemiological and aetiological factors now focusing on molecular and epidemiology studies including DNA damage recognition and repair with particular focus on adolescent patients. Collaborators Birch, Taylor, Meyer, Moran, Geraci, Alston, Greaves, Roman, Shah and McNally 6. RAPPORT study PIs Bridget Young, Peter Salmon, Jonathan Hill, Tim Eden. Focussing on parent/carer interactions, relationships and processes between parents and doctors regarding children with leukaemia 2007 – 2009. 7. Alleviating emotional distress in adolescent survivors of cancer involving investigation of the maintenance of emotional distress following medical treatment and to adapt better cognitive therapy to alleviate such distress. PIs Fisher, Eden, Young, Salmon. 8. Evidence based Cochrane review studies particularly related to oral care resulting in the production of evidence based national guidelines. Key publications (max 5) specifically related to PPO. Eden OB, Black I, Emery AEH, The use of taped parental interviews to improve communication with childhood cancer families. Pediatric hematology and Oncology 1993 Vol 10: pp 157 – 162. Eden OB, Black I, MacKinley GA, Emery AEH. Communication with parents of children with cancer. Palliative Medicine 1994 Vol 8: pp 105 – 114. Eden T, Pui CH, Schrapper M, Tognoni G, Masera G. All children have the right to full access to treatment for cancer. The Lancet September 25th 2004 1121 – 1122. Hill J, Kondryn H, Mackie E, McNally R, Eden T. Adult psychosocial functioning following childhood cancer: the different roles of sons’ and daughters’ relationships with their fathers and mothers. Journal of Child Psychology/Psychiatry 2003 Vol 44: Issue 5: pp 752 – 762 Jankovic MD, Spinetta JJ, Masera G, Barr R, D’Angio GJ, Epelman C, Evans A, Kosmidis HV, Eden T. Communicating with the dying child: An invitation to listening – A report of the SIOP working committee on psychosocial issues in pediatric oncology, Pediatric Blood & Cancer 2008; 50: 1087 – 1088.

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Last Name Edwards First Name Lesley Title Dr Degrees BSc, MSc, Certificate family Marital Therapy, PsychD Contact information Psychological Medicine Royal Marsden NHS Trust Downs Road Sutton, Surrey SM2 5PT UK Email address [email protected] Profession Consultant Clinical Psychologist Function Team leader pediatric psychology team Royal Marsden Hospital. Main activities Both Focus of research • Academic achievements following treatment for a childhood brain tumour • Social functioning following treatment for childhood cancer. • Drug intervention for children with attention and concentration problems following treatment. • Obesity following treatment for childhood cancer. • The psychological needs of children of adult cancer patients Attending SIOP Berlin 2008 Yes/NO not sure yet, depending on funding. Research projects (duration and start date) 1. Drug intervention study for survivors of childhood brain tumours with impairment of attention and concentration (to start Oct 2008, 18 months). 2. Academic achievement and special educational support with regards to survivors of childhood brain tumours ( started June 2008, duration 1 year) 3. Obesity multi-disciplinary intervention study for survivors of childhood cancer ( About to go through ethics, 18 month study) 4. Development of educational guidelines: information for schools when a pupil has cancer. Key publications (max 5) Edwards L & Palmer J (2007) Facing the death of your child CCLG/Royal Marsden publication Edwards L (2005) Primary school Prima Donnas: How to help them manage having cancer. The Childhood Cancer Unit Parents Association newsletter (CCUPA) summer 2005 Edwards L (2005) Toddler madness: how on earth can you cope? The Childhood Cancer Unit parents Association newsletter (CCUPA) Spring 2005 Edwards L, Watson M, ST James –Roberts I, Ashley S, Tilney C, Osborn T, Baldus C & Romer G (2008) Adolescent’s stress responses and psychological functioning when a parent has early breast cancer. Psycho-Oncology, 5 Mar 2008 Watson, M. St James-Roberts, I., Ashley, S., Tilney, C., Brougham, L., Edwards, L., Baldus, C. and Romer, G. (2006) Factors associated with emotional and behavioural problems among school age children of breast cancer patients. British Journal of Cancer, 94, 43-50.

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Last Name Eiser First Name Christine Title Professor Degrees Bsc phd Contact information Dept. Of psychology, university of sheffield, western bank, sheffield. S10 2tp,uk Email address [email protected] Profession Psychologist Function ? Main activities Research, Teaching Focus of research Survivorship, quality of life Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Novo Nordisk, Serono and Pfizer pharmaceuticals Quality of life after growth hormone treatment. Eiser C & Butler G. 2006-2008 2. Weston Park Hospital Appeal Long-term cancer survival R Ross, Dr H. Davies and Dr D Greenfield) 2004- 2009 3. MRC Quality of life during treatment for childhood leukaemia Eiser C, Jenney M (Cardiff) Vora AJ. 2004- 2009 4. Lisa Thaxter Trust.Palliative care in children with brain Eiser C & Brook, L. Liverpool) 2007-2009 5. Myeloma UK Myeloma Living with advance myeloma: A study to identify the preventable and manageable late effects of modern clinical management. Snowden J, Eiser C, Greenfiled D & Ahmedzai S. 2008-2010 6. Cancer Research-UK Immediate and longer term consequences for men who bank sperm prior to cancer diagnosis Eiser C & Pacey A. 7. Weston Park Cancer Appeal Smoking and quality of life after cancer diagnosis Collaborative study with Sheffield Medical School (Danson S, Eiser C Woll P, Wadsley J). Key publications (max 5) Eiser C, Morse R A review of measures of quality of life for children with chronic illness Arch Dis Child 84, 3, 205-211, 2001. Eiser C, No pain, no gain? Integrating QoL assessment in pediatrics Arch Dis Child 2007; 5: 379-380 Clarke SA, Skinner R & Eiser C. Health-related quality of life in survivors of bone marrow transplantation for pediatric malignancy: A systematic review of the literature. Bone Marrow Transplantation, in press Eiser C, Absolom K, Greenfield D, Snowden J, Coleman R, Hancock B, Davies H. Follow-up care for young adult survivors of cancer: lessons from pediatrics. Journal of Cancer Survivors, 2007; 1: 75-86 Wallace WHB, Blacklay A, Eiser C, et al. Developing strategies for long term follow up of survivors of childhood cancer, British Medical Journal 323, 7307, 271-274, 2001.

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Last Name Elkin First Name David Title Associate Professor Degrees Ph.D. Contact information University of Mississippi Medical Center Department of Psychiatry 2500 N. State Street Jackson, MS 39216-4505 USA Email address [email protected] Profession Psychologist Function Psychology Training Director, Supervisor, Project Leader Main activities Both patient Care and research Focus of research Adolescents, family functioning, late effects, coping Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Contact psychologist for COG protocols involving neuropsych or psych components 2. Family functioning in children with cancer (start: 5 May 2008, recruiting) 3. Cytokines and depression in children with cancer (start: 1 October 2008, in preparation) 4. Interventions to remediate osteoporosis in children treated for cancer (start: 1 July, approved, starting this summer). Key publications (max 5) Elkin, T.D., Jensen, S.A., McNeil, L., Gilbert, M.E., Pullen, J., & McComb, L. (2007). Religiosity and coping in mothers of children diagnosed with cancer: An exploratory analysis. Journal of Pediatric Oncology Nursing, 24(5), 274-278. Taylor, L., Simpson, K., Bushardt, R., Reeves, C., Elkin, T.D., Fortson, B., Boll, T.J., and Patel, S. (2006). Insurance barriers among childhood survivors of pediatric brain tumors: The case for neurocognitive evaluations. Journal of Pediatric Neurosurgery, 42(4), 223-227. Stoppelbein, L., Greening, L., Elkin, T.D. (2006). Risk of Post-traumatic Stress Symptoms: A Comparison of Pediatric Cancer Survivors and Bereaved Families. Journal of Pediatric Psychology, 31(4), 367-376. Fuemmeler, B.F., Elkin, T.D. & Mullins, L.L. (2002). Survivors of childhood brain tumors: Behavioral, emotional, and social adjustment. Clinical Psychology Review, 22, 547-585.

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Last Name Engelen First Name Vivian Title Degrees MSc Contact information +31-(0)20-5668225 Email address [email protected] Profession Pedagogue (pediatric psychology) Function PhD Student, junior researcher Main activities Research Focus of research Psychosocial oncology Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. QLIC-ON study. Duration: 4-5 years. Start date: September 2005. Aim is to determine whether providing Patient Reported Outcome (PRO) on Health Related Quality of Life (HRQOL) help pediatric oncologists to identify and discuss HRQOL problems in children with cancer. Key publications (max 5) QLIC-ON PROfile: development of an intervention for pediatric oncologists that facilitates communication about HRQOL problems in children with cancer (poster SIOP 2008; paper in preparation) Communication about psychosocial functioning in pediatric oncology practice: the pediatric oncologists’ perspective (poster SIOP 2008) Psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands (paper in preparation)

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Last Name Essen, von First Name Louise Title Professor Degrees PhD Contact information Institutionen för folkhälso- och vårdvetenskap Enheten för vårdvetenskap Uppsala universitet Uppsala science park S-751 83 Uppsala Sweden tel: 018-4713484, 070-4250714 Email address [email protected] Profession Professor, psychologist Function Main activities Research Focus of research Psychosocial pediatric oncology Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Cancer during adolescence. Psychosocial and health economic consequences (start 2000, continuing) 2. Posttraumatic stress disorder among parents of children with cancer (start 2002, continuing) 3. Treatment of posttraumatic stress disorder among parents of children with cancer (start 2008) Key publications (max 5) von Essen, L., Sjödén, P.O. & Mattsson, E. (2004). Swedish mothers and fathers of a child diagnosed with cancer – a look at their quality of life. Acta Oncologica, 43, 474-479. Hedström, M., Ljungman, G. & von Essen, L. (2005). Perceptions of distress among adolescents recently diagnosed with cancer. Journal of Pediatric Hematology/ Oncology, 27, 15-22. Hedström, M., Kreuger, A., Ljungman, G., Nygren, P. & von Essen, L. (2006). Accuracy of assessment of distress, anxiety and depression by physicians and nurses in peadiatric oncology care. Pediatric Blood & Cancer, 46, 773-779. Jörngården, A., Mattsson, E. & von Essen, L. (2007). Health-related quality of life, anxiety, and depression among Swedish adolescents and young adults with cancer. European Journal of Cancer, 43, 1952-1958. Pöder, U., Ljungman, G. & von Essen, L. (2008). Posttraumatic stressdisorder among parents of children on cancer treatment: a longitudinal study. Psycho-Oncology, 17, 430-437.

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Last Name Frugé First Name Ernest Title Associate Professsor, Director Psychosocial Programs Degrees Ph.D. Contact information Departments of Pediatrics and Family & Community Medicine Texas Children's Cancer Center & Hematology Service Houston, Texas USA Email address [email protected] Profession Psychologist Function See below Main activities Organizational Consultation, Education, Research, Clinical Consultation Focus of research Physician education, long term survivorship Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Vocational and Employment Experiences of Long-Term Survivors of Childhood Cancer. (Start Date: July, 2007). 2. Promoting Physician’s Cultural Competence Through Reflective Practice. (Start Date: July, 2006) 3. Learning for Leadership: Training for Reflective Practice in Pediatric Hematology/Oncology and Beyond. (Start Date: July, 2003) Key publications (max 5) Whitney, S.N., McCullough, L.B., Frugé, E., McGuire, A.L. & Volk, R.J. Beyond Breaking Bad News: The Roles of Hope and Hopefulness. Cancer, In Press. Whitney, S.N., Ethier, A.M., Frugé, E., Berg, S., McCullough, L. & Hockenberry, M. Decision Making in Pediatric Oncology – Who Should Take the Lead? The Decisional Priority in Pediatric Oncology Model. Journal of Clinical Oncology, 2006, 24, No. 1: pp. 160-165.Frugé, E. & Horowitz, M. Leadership dimensions of the physician’s role: A transitional approach to training in Pediatric Hematology/Oncology. In G. Amado & L. Vansina (Eds.) The Transitional Approach in Action: The Harold Bridger Transitional Series. Vol. II, London: Karnac, 2004. Frugé, E. & Adams, C. …and then the missionaries became cannibals…: Resuscitation of Empathy in a Pediatric Oncology Nursing Service and the Principles and Practice of Application in the Group Relations Tradition. In S. Cytrynbaum & D. Noumair (Eds.) Group Dynamics, Organizational Irrationality, and Social Complexity: Group Relations Reader III. Washington, D.C.: A.K. Rice Institute 2004. Bray, J. H. & Frugé, E. Assessment and evaluation of families with HIV/AIDS: Application to prevention and care. In W. Pequegnat & J. Szapocznik (Eds.) Working With Families in the Era of HIV/AIDS. Thousand Oaks, CA: SAGE Publications, Inc., 2000.

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Last Name Gazendam-Donofrio First Name Stacey Title Degrees MSc Contact information Wenckebach Institute University Medical Center Groningen PO Box 30 001 9700 RB Groningen the Netherlands Email address [email protected] Profession psychologist Function researcher Main activities Research Focus of research Quality of life, short and long term adaptation, family functioning, ptss, children, parents, interventions Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Childrens’ functioning following parental cancer; end date: 2010 Key publications (max 5) Gazendam-Donofrio, S.M., Hoekstra, H.J., Graaf, W.T.A. van der, Wiel, H.B.M. van de, Visser, A., Huizinga, G.A., Hoekstra-Weebers, J.E.H.M. (2007). Family functioning and adolescents' well-being when a parent has cancer. Annals of Oncology, 18, 1951-1956. Gazendam-Donofrio, S.M., Hoekstra, H.J., Graaf, W.T.A. van der, Pras, E., Visser, A., Huizinga, G.A., Hoekstra-Weebers, J.E.H.M. (2008). Quality of life of parents with children living at home: when one parent has cancer. Supportive Care in Cancer, 16, 133-141. Tuinman MA, Gazendam-Donofrio SM, Hoekstra-Weebers JEHM. (2008). Screening and referral for psychosocial distress in oncologic practice: use of the Distress Thermometer. Cancer, 113, 870-878.

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Last Name Gerhardt First Name Cynthia Title Assistant Professor of Pediatrics and Psychology Degrees Ph.D. Contact information The Research Institute at Nationwide Children’s Hospital 700 Children’s Drive Columbus, OH 43206 USA Email address [email protected] Profession Psychologist Function Main activities Research, Teaching Focus of research Individual and family adjustment to childhood cancer from diagnosis to survivorship to end-of-life Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Psychosocial Outcomes for Pediatric Brain Tumor Survivors (Site-PI), 07/01/03-06/30/08, ACS 2. Sibling and Parent Bereavement from Childhood Cancer (PI), 06/01/05-05/31/10, NIH/NCI 3. Social Outcomes in Pediatric (CI), 04/01/06-03/31/11, NIH/NICHD 4. Parent-Child Communication about Cancer (Site-PI), 04/01/07-03/31/12, NIH/NCI 5. Quality of Life among Families in Pediatric Palliative Care, (PI) 01/01/08-12/31/08, The Research Institute at Nationwide Children’s Hospital Key publications (max 5) Gerhardt, C. A., Vannatta, K., Valerius, K. S., Correll, J., & Noll, R. B. (2007). Social and romantic outcomes in emerging adulthood among survivors of childhood cancer. Journal of Adolescent Health, 40, 462.e9-462.e15. Gerhardt, C. A., Gutzwiller, J., Huiet, K. A., Vannatta, K., Fischer, S., & Noll, R. B. (2007). Parental adjustment to childhood cancer: A replication study. Journal of Families, Systems, and Health, 25, 263- 275. Robinson, K. E., Gerhardt, C. A., Vannatta, K., & Noll, R. B. (2007). Parent and family factors associated with child adjustment to pediatric cancer. Journal of Pediatric Psychology, 32, 400-410. Gerhardt, C. A., Dixon, M., Miller, K., Vannatta, K., Valerius, K. S., Correll, J., & Noll, R. B. (2007). Educational and occupational outcomes in emerging adulthood among survivors of childhood cancer. Journal of Developmental and Behavioral Pediatrics, 28, 448-455. Vannatta, K., Gerhardt, C. A., Wells, R., & Noll, R. B. (2007). Intensity of CNS treatment for pediatric cancer: Prediction of social outcomes in survivors. Pediatric Blood & Cancer, 49, 716-722.

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Last Name Goldbeck First Name Lutz Title Prof. Degrees Ph.D. Contact information University Hospital Ulm Dptm. Child & Adolescent Psychiatry/Psychotherapy Steinhoevelstr. 5 D-89075 Ulm GERMANY Email address [email protected] Profession Pediatric Psychologist Function Head of outpatient mental health clinic for children and adolescents ; Senior researcher / projectleader Main activities Both Patient Care and Research Focus of research Psychiatric comorbidity; coping; (parental) quality of life; psychosocial late effects Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Psychosocial adaptation of long-term survivors after cancer during adolescence (October 2007 – September 2009) 2. Effectiveness of family-oriented inpatient rehabilitation (July 2007 – June 2008) 3. Prevalence of emotional and behavioral symptoms in children with cancer and their healthy siblings (in preparation) Key publications (max 5) Goldbeck L. (2001) Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples, and quality of life. Psycho-Oncology 10:325-335 Goldbeck, L. (2006) The impact of newly diagnosed chronic pediatric conditions on parental quality of life. Qual Life Res 15:1121-31. Goldbeck, L. & Melches, J. (2006). The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol Young 16:67-75. Goldbeck, L., Koffmane, K., Lecheler, J., Thiessen, K., & Fegert, J. M. (2007) Disease severity, mental health, and quality of life of children and adolescents with asthma. Pediatric Pulmonology 42:15-22. Alderfer, M., Fiese, B., Gold, J., Holmbeck, G., Goldbeck, L., Chambers, C., Abad, M., Spetter, D. & Patterson J. (2007): Evidence-based Assessment in Pediatric Psychology. Family Measures. J Pediatr Psychol. 2007 Sep 28; [Epub ahead of print]

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Last Name Gray First Name Christine Title Pediatric Psychologist Degrees Ph.D. Contact information Children’s Hospital Central California Behavioral Health Services, MB 08 9300 Valley Children’s Place Madera, CA 93636-8762 (559) 353-6735 Email address [email protected] Profession Pediatric Psychologist Function Clinical (providing direct psychological services to oncology patients) Main activities Patient Care Focus of research N/A – Potential interest in being a data collection site if our institution is willing to support this activity. Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Currently a data collection site for ALL0331-HRQOL study. Key publications (max 5) Gray, C.C. & Rodrigue, J.R. (2001). Brief Report: Perceptions of young adolescents toward a hypothetical new peer with cancer: An analog study. Journal of Pediatric Psychology, 26, 247-252.

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Last Name Griessmeier First Name Barbara Title Degrees Diplom- Musiktherapeutin (FH) Contact information PsychoSozialerDienst Kinder- und Jugendlichenpsychotherapeutin Universitätsklinik Frankfurt Zentrum der Kinderheilkunde und Jugendmedizin Klinik III - pädiatrische Onkolologie und Hämatologie Theodor-Stern-Kai 7 60590 Frankfurt tel 069/6301 4751, fax 069/6301 6056 Email address [email protected] Profession Music Therapist, Child Psychotherapist Function member of psychosocial care team Main activities Patient Care and Research Focus of research Development of guidelines Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Development of clinical practice guidelines in paediatric oncology since 1997

Key publications (max 5) Grießmeier, B., Bossinger, W.(1994a): Musiktherapie mit krebskranken Kindern, Gustav-Fischer-Verlag, Stuttgart Grießmeier, B. (1995b): Die psychosozialen Dienste in der pädiatrischen Onkologie. Ergebnisse einer bundesweiten Umfrage. In: Klin.Pädiatrie (1995) 207, S. 174 - 180 Grießmeier, B. (1996): Zum Problem der Standardisierung psychosozialer Tätigkeiten in der pädiatrischen Onkologie Schreiber-Gollwitzer,B., Schröder,H., Grießmeier, B, Labouvie,H., .Lilienthal,S. (2003b): Quantitative und qualitative Erfassung patientenbezogener psychosozialer Tätigkeiten in der pädiatrischen Onkologie und Hämatologie – eine multizentrische Umfrage im Auftrag der PSAPOH In: Klinische Pädiatrie (2003),215, S.171 – 176 Schröder,H., Lilienthal,S., Schreiber-Gollwitzer,B.M., Grießmeier,B (2008): Psychosoziale Versorgung in der pädiatrischen Onkologie In: Deutsche Krebsgesellschaft: Kurgefasste interdisziplinäre Leitlinien 2008, Zuckschwerdt-Verlag

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Last Name Grootenhuis First Name Martha Title Dr. Degrees PhD, registred health psychologist Contact information Emma Children’s Hospital Academic Medical Center Psychosocial Pediatric Department, G8-224 Meibergdreef 9 1105 AZ Amsterdam The Netherlands Email address [email protected] Profession Pediatric Psychologist Function Head Psychosocial Research dept.; project leader Main activities Mainly research Focus of research Quality of life; course of life; interventions; neuropsychological outcome; pediatric psychology Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. VOLG-project: Course of life, quality of life and coping of survivors of childhood cancer. (ended 2007: see Heleen Maurice-Stam) 2. CARE project: Emotional, financial and social consequences for parents of children with a chronic disease (2005-2008) 3. QLIC-On project: Health Related Quality of Life assessment in daily pediatric oncology practice (2006- 2011: see Vivian Engelen) 4. Late consequences and needs of young survivors of a brain tumor and their parents (2006-2010: see Eline Aukema) 5. Neuropsychological functioning of children with sickle cell disease (2007-2010) 6. Psycho-educational course program for children with cancer Op Koers online: www.opkoersonline.nl (2008-2010) 7. The efficacy of neurofeedback to improve attention and memory functioning in childhood cancer survivors: a randomised controlled trial (2008-2012) in progress: 1. ACTION: ACtivating Transition and Autonomy. Both patients, parents and health care professionals will be made responsible for steps in the process of growing up and living with cancer (in preparation) 2. Measuring survivor-specific QoL (translation of the Benefit Scale (Phipss) and Impact of Cancer Scale (Zebrack) 3. Effect of ambient experience on pain and fear in pediatric oncology 4. Use of serious-gaming to improve health behaviour in pediatric oncology Key publications (max 5) Hatzmann J, Ferrer-Carbonell A, van Praag BMS, Heymans HSA, Grootenhuis MA. The Care project: Hidden consequences of success in pediatrics, parental Health Related Quality of Life (Pediatrics in press) van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA. 2007 Jun 27;297(24):2741-51. Review. Maurice-Stam H, Silberbusch LM, Last BF, Grootenhuis MA. Evaluation of a psycho-educational group intervention for children with cancer: a pilot study. (Psycho-oncology, in press) Grootenhuis MA, Koopman HM, Verrips EG, Vogels AG, Last BF. Health-related quality of life problems of children aged 8-11 years with a chronic disease. Dev Neurorehabil. 2007 Jan-Mar;10(1):27-33. Klassen A., Maurice-Stam H, Sonya Strohm, Grootenhuis MA. Systematic Review Of Pediatric Oncology- Specific Quality Of Life Questionnaires (submitted)

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Last Name Haase First Name Joan Title Holmquist Professor in Pediatric Oncology Nursing Degrees PhD Contact information Indiana University School of Nursing, Indianapolis, IN 46202 USA Email address [email protected] Profession Nursing Function Faculty Main activities Research Focus of research Resilience and Quality of Life in Adolescents/Young Adults w/ Cancer Communication about End-of-Life Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Music Video and Adolescent Resilience During Transplant NIH/NINR/NCI 1 R01 NR008583-01 2005-09 2. Palliative Care and End-of-Life Communication Experiences of Pediatric Oncology Nurses, Oncology Nursing Foundation and Alex’s Lemonade Stand Foundation for Childhood Cancer 2008-10 Key publications (max 5) Haase, J.E. (1987). The components of courage in chronically ill adolescents, Advances in Nursing Science, 9(2), 64-80. Haase, J.E., Heiney, S., Ruccione, K., & Stutzer, C. (1999) Research triangulation to derive meaning- based quality-of-life theory: Adolescent resilience model and instrument development. International Journal of Cancer, Supp. 12, 125-131. Haase, J.E. (2004). The adolescent resilience model as a guide to interventions. Special Section: Proceedings from the 5th Annual State of the Science Workshop on Resilience and Quality of Life in Adolescents. Journal of Pediatric Oncology Nursing. 21(5), 289-299. Decker, C.L., Haase, J.E., & Bell, C.J. (2007). Uncertainty in adolescents and young adults with cancer. Oncology Nursing Forum, 34(3), 681-688. Phillips-Salimi, C.R., Haase, J.E., Kintner, E.K., Monahan, P., & Azzouz, F. (2007). Psychometric properties of the Herth Hope Index in adolescents and young adults with cancer. Journal of Nursing Measurement, 15(1), 3-23.

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Last Name Hedderly First Name Tammy Title dr Degrees Mbbs bsc(hons) mrcpch Contact information [email protected] Email address Profession Consultant pediatric neurologist Function Paed brain tumours clinical Main activities Patient Care; Research, Both Focus of research Late effects brain tumours paed Attending SIOP Berlin 2008 Yes Research projects (duration and start date) Key publications (max 5)

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Last Name Heger First Name Birgit Title Mag.rer.nat. Degrees Magister Contact information Landes-Frauen- und Kinderklinik Linz Krankenhausstrasse 26 A-4020 Linz phone:+43 50 554/63-25205 Email address [email protected] Profession clinical psychology Function clinical psychology Main activities Patient Care Focus of research ------Attending SIOP Berlin 2008 NO Research projects (duration and start date) ------Key publications (max 5) ------

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Last Name Hernandez núñez-polo First Name Mercedes Title Psychologist Degrees Fellow in clinical pediatric psychology Contact information Hospital Infantil Universitario Niño Jesús, Madrid, Spain Email address [email protected] Profession Psychologist Function Psychologist in oncohematology unit Main activities Patient Care; Research, Both Focus of research Psychosocial Protocol in Bone Marrow Transplant Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Quality of life and behavioural disorders in bone marrow transplantation for childhood cancer 2007- 2008 (in process for publications) 2. Speaking about death at the end of life. 2007; one year; in process for publication Key publications (max 5) 50 Reunión Nacional de la Asociación Española de Hematología y Hemoterápia. AEHH El niño ante la enfermedad oncohematológica. Murcia, (España), 2008 (Oral presentation) 40th Congress of the International Society of Pediatric Oncology (SIOP) Prospective evaluation of quality of life and behavioural disorders in bone marrow transplantation for childhood cancer and inherited metabolic diseases. (Poster). Berlin, Germany 2008 10th World Congress of Psycho-Oncology Child, immigrant, cancer: "Cultural shock". A bridge to developing countries twining cancer programs. (Oral presentation) Madrid, Spain 2008 7th National Congress of the Palliative Care Society (SECPAL) Hablar de la muerte al final de la vida: el niño con cáncer. (Oral presentation) Salamanca. Spain 2008 8th Continental Meeting, International Society of Pediatric Oncology in Africa (SIOP-Africa) Bone marrow transplant: quality of life and behavioural disorders in pediatric patients. prospective study (Oral presentation) Tunis, Tunisia 2008

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Last name Hobin First name Dave Title Dr Degrees Bsc mb chb Contact information Email address [email protected] Profession Consultant pediatric oncologist Function Main activities Focus of research Support for professional working within pediatric oncology / bioethics Attending siop berlin 2008 Yes Research projects (duration and start date) ------Key publications (max 5) ------

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Last Name Hoekstra-Weebers First Name Josette Title Degrees PhD Contact information Wenckebach Institute University Medical Center Groningen PO Box 30 001 9700 RB Groningen the Netherlands Email address [email protected] Profession sociologist Function Senior researcher Main activities Research Focus of research Quality of life, short and long term adaptation, family functioning, ptss, children, parents, interventions Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Long-term parent’s adjustment to pediatric cancer; end date: 2010 2. Childrens’ functioning following parental cancer; end date: 2010 Key publications (max 5) Wijnberg-Williams, B.J., Klip, E.C., Kamps, W.A., Hoekstra-Weebers, J.E.H.M. (2006). Psychological adjustment of parents of pediatric cancer patients revisited: five years later. Psycho-Oncology,15,1-8. Wijnberg-Williams, B.J., Kamps, W.A., Klip, E.C., Hoekstra-Weebers, J.E.H.M. (2006). Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: long- term prospective results. Journal of Pediatric Psychology, 31, 785-792. Visser, A., Huizinga, G.A., Hoekstra, H.J., Graaf, W.T.A. van der., Gazendam-Donofrio, S.M., Hoekstra- Weebers, J.E.H.M. (2007). Emotional and behavioural problems in children of parents recently diagnosed with cancer: a longitudinal study. Acta Oncologica, 46, 67-76. Visser, A., Huizinga, G.A., Hoekstra, H.J., Graaf, W.T.A. van der, Hoekstra-Weebers, J.E.H.M. (2007). Temperament as a predictor of internalising and externalising problems in adolescent children of parents diagnosed with cancer. Supportive Care in Cancer, 15, 395-403. Gazendam-Donofrio, S.M., Hoekstra, H.J., Graaf, W.T.A. van der, Wiel, H.B.M. van de, Visser, A., Huizinga, G.A., Hoekstra-Weebers, J.E.H.M. (2007). Family functioning and adolescents' well-being when a parent has cancer. Annals of Oncology, 18, 1951-1956.

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Last Name Honda First Name Nami Title M.D Degrees Student: a doctoral course Contact information Department of Psychiatry, Tohoku University Graduate School of Medicine 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan Phone: +81-22-717-7262 Fax: +81-22-717-7266 Email address [email protected] Profession Psychiatrist, Logotherapist Function Student: a doctoral course Main activities Patient Care & Research Focus of research Child & adolescents, family; post-traumatic stress, Psychotherapy (Logotherapy) Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Organization psychosocial support system for child & family with pediatric surgery disease. From Sep, 2008 to Aug 2009. Key publications (max 5) Psychosocial liaison-consultation for the children who have undergone repair of imperforate anus and Hirschsprung’s disease. J Pediatr Surg 40:1156-1162(2005) Psychosocial Status of Long-Term Survivors with Childhood Malignant Solid Tumors: Meaning of Cancer and Logotherapy (SIOP abstract)

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Last Name Hovén First Name Emma Title Degrees BSc in Psychology Contact information Childhood Cancer Research Unit, Q6:05 Astrid Lindgren Children’s Hospital S-171 76 Stockholm SWEDEN Phone:+46 8 517 729 49 Email address [email protected] Profession Ph.D. student Function Ph.D. student Main activities Research Focus of research Adult survivors of childhood CNS tumours; Health-related late effects; Persistent care needs; Evaluation of care; Impact of illness on family. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Patients and parents after childhood central nervous system tumour treatment: Persistent late effects, and evaluation of care and follow-up. Start: 2007, duration: ~ 3 years (project leader Boman, K.K.). Key publications (max 5) Hovén, E., Anclair M., Samuelsson, U., Kogner, P. & Boman K. K. (in press). The influence of pediatric cancer diagnosis and illness complication factors on parental distress. Journal of Pediatric Hematology/Oncology. Anclair, M., Hovén, E., Lannering, B. & Boman, K. K. (in press). Parental fears after a child’s brain tumor diagnosis and treatment. Journal of Pediatric Oncology Nursing. Conference abstracts: Hovén, E. & Boman K. K. Adult survivors of childhood CNS tumours: Persistent health care needs and long-term impact on family. Abstract number: 473 Boman K. K., Hovén, E., Anclair, M., Lannering, B. & Gustavsson, G. Persistent health and functional late effects in adult survivors after childhood CNS tumour and treatment: A nation-wide cohort study. Abstract number: 567

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Last Name Huisman First Name Jaap Title Dr Degrees PhD Contact information VU university medical center Dpt Medical Psychology P.O. Box 7057 1007 MB Amsterdam The Netherlands Tel +31 (0)20 4440861 Email address [email protected] Profession Psychologist Function Head Pediatric Psychology Main activities Both Patient Care and Research Focus of research Late effects, Quality of Life, Psychosocial intervention Attending SIOP Berlin 2008 Yes Research projects (duration and start date) *in child oncology 1. Psychosocial functioning and quality of life in retinoblastoma survivors and parents in the Netherlands (2004-2008) 2. The ALL-10 treatment protocol in children with acute lymphoblastic leukaemia: a study assessing adjustment and quality of life and its determinants (2006-2012) 3. A combined physical exercise and psychosocial training program to improve physical fitness in children with cancer (2008-2012). Key publications *in child oncology Jansen NC, Kingma A, Schuitema A, Bouma A, Huisman J, Veerman AJ, Kamps WA. Post-treatment intellectual functioning in children treated for acute lymphoblastic leukaemia (ALL) with chemotherapy- only: a prospective, sibling-controlled study. Eur J Cancer 2006; 42: 2765-72. Dijk J van, Huisman J, Moll AC, Schouten-van Meeteren AYN, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health and Quality of Life Outcomes 2007, 5:65. Dijk van EM, Dulmen-den Broeder van E, Kaspers GJL, Dam van EWCM, Braam KI, Huisman J. Psychosexual functioning of childhood cancer survivors. Psycho-Oncology 2008, 17(5): 506-11. Huisman J, Aukema EJ, Deijen JB, Coeverden SCCM van, Kaspers GJL, Pal HJH van der, Delemarre-van de Waal HA.The usefulness of growth hormone treatment for psychological status in young adult survivors of childhood leukaemia: an open-label study. BMC Pediatrics 2008, 8:25. DOI: 10.1186/1471- 2431-8-25. Dijk J van, Oostrom KJ, Imhof SM, Moll AC, Schouten-van Meeteren AYN, Bezemer PD, Huisman J. Behavioural functioning of retinoblastoma survivors. Psycho-Oncology 2008. DOI: 10.1002/pon.1381.

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Last Name Indekeu First Name Astrid Title Mrs Degrees master in clinical psychology Contact information U.Z.Leuven Herestraat 49 3000 Leuven Email address [email protected] Profession clinical psychologist Function clinical psychologist Main activities Patient Care and Research Focus of research siblings, long term follow-up Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Quality of life of siblings of severe and chronic ill children (cystic fibrosis/ diabetes/ heart disease/ cancer), joint project of the clinical psychologists working on the pediatric units in UZLeuven, started two years ago with the cystic fibrosis group, since the beginning of 2008 the other groups are included. Project in the phase of gathering the data. 2. Participating in the E 2020-333 & 334 study of EISAI and Quintiles: clinical study of a new drug for children with cognitive deficits attributed to the cancer or cancer treatment. The study is a combination of a medical and neuropsychological investigation, in the phase of pre-screening the eligible children. 3. Participating in Euramos I, trial van de European and American osteosarcoma study group, overall survival en toxicity, QOL. Key publications (max 5) Indekeu, A., Vercruysse, T., Bracke, I., Uyttebroeck, A., Renard, M; (2008). Een kind met kanker in de klas: hernieuwing van de onderwijskoffers. In Te veel… of… te weinig, Trop… ou… trop peu. Congresboek van het 36 ste jaarlijks congres van de Belgische Vereniging voor Kindergeneeskunde. (p. 185). Vercruysse, G., Indekeu, A., Uyttebroeck, A., Renard, M. (2008). De nood aan een goed uitgebouwde brussenwerking op een kinderhemato-oncologische afdeling. In Te veel… of… te weinig, Trop… ou… trop peu. Congresboek van het 36 ste jaarlijks congres van de Belgische Vereniging voor Kindergeneeskunde.(p. 177-178).

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Last Name Jansen First Name Nathalie Title MSc Degrees Contact information Wilhelmina Children’s Hospital Pediatric Psychology @ Social Work KA.00.004.0 P.O. Box 85090 3508 AB Utrecht, The Netherlands Email address [email protected] Profession Psychologist Function PhD student Main activities Both Focus of research Neurocognitive, qualitiy of life Attending SIOP Berlin 2008 I hope so. Research projects (duration and start date) 1. Cognitive functioning in children treated for ALL. My thesis will be finished soon. Key publications (max 5) Jansen NC, Kingma A, Schuitema A, et al. Satisfactory neuropsychological outcome in chemotherapy- only treated children with acute lymphoblastic leukemia (ALL), but subgroup at risk for mild specific impairment. J Clin Oncol, in press Jansen NC, Kingma A, Schuitema A, et al. Post-treatment intellectual functioning in children treated for acute lymphoblastic leukaemia (ALL) with chemotherapy only: a prospective, sibling-controlled study. Eur J Cancer 2006;42(16):2765-72 Jansen NC, Kingma A, Tellegen P, et al. Feasibility of neuropsychological assessment in leukaemia patients shortly after diagnosis: directions for future prospective research. Arch Dis Child 2005;90(3):301-4

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Last Name Kars First Name Marijke Title Ph.D Degrees Contact information UMC Utrecht, STR 3.130 PO Box 85060 3508 AB Utrecht Tel ++ 31 88 7568092 Email address [email protected] Profession Nurse researcher, Pediatric Nurse Function Researcher Main activities Research Focus of research Pediatric Palliative Care, Pediatric Cancer, Family functioning especially the role of parents Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. 2004-2009: PRESENCE study: identification of parental stress, needs and coping strategies when caring for their child with cancer at home during the palliative phase Key publications (max 5) Kars, M.C., Duijnstee, M.S.H., Pool, A., Delden, J.J.M. & Grypdonck, M.H.F. (2008). Being there. Parenting the child with Acute Lymphoblastic Leukaemia. Journal of Clinical Nursing 17(12), 1543-1552

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Last Name Kazak First Name Anne Title Director, Department of Psychology, Children’s Hospital of Philadelphia Degrees Ph.D., ABPP Contact information Children’s Hospital of Philadelphia 34th St. and Civic Center Blvd., Room 1486 CHOP North Philadelphia PA. 19104 Email address [email protected] Profession Psychologist Function Main activities Patient Care; Research, Both Focus of research Child and family adjustment to childhood cancer; Evidence based assessment and intervention; Survivorship; Bereavement Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Integrating cognitive behavioral and family therapy approaches in interventions for children with cancer and their families; 2. Psychosocial Assessment Tool-identifying risk in newly diagnosed patients and their families; 3. Medical traumatic stress; 4. Mentoring behavioral researchers in pediatric cancer. Key publications (max 5) Kazak, A., Alderfer, M., Streisand, R., Simms, S., Rourke, M., Barakat, L., Gallagher, P. & Cnaan, A. (2004). Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: A randomized clinical trial. Journal of Family Psychology, 18, 493-504. Kazak, A., Rourke, M., Alderfer, M., Pai, A., Reilly, A. & Meadows, A. (2007). Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. Journal of Pediatric Psychology, 32, 1099-1110. Pai, A., Patino-Fernandez, A.M., McSherry, M., Beele, D., Alderfer, M., Reilly, A., Hwang, W.T., & Kazak, A. (2008).The Psychosocial Assessment Tool (PAT2.0): Psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 33, 50-62. Power, T., DuPaul, G., Shapiro, E. & Kazak, A. (2003). Promoting Children’s Health: Integrating School, Family and Community. New York: Guilford Press. Spirito, A. & Kazak, A. (2006). Effective and Emerging Treatments in Pediatric Psychology. New York: Oxford University Press.

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Last Name Kennedy First Name Colin Title Professor Degrees MBBS MD Contact information Mailpoint 21 Southampton General Hospital, Southampton, SO16 6YD, United Kingdom Email address [email protected] Profession Medicine Function Consultant pediatric neurologist and professor in neurology and pediatrics. Project leader. Main activities Both Patient Care and also Clinical Research. Chair of ‘Quality of Survival’ working groups of a) CNS Division of CCLG and b) Brain Tumour Committee of SIOP-E Focus of research Quality of survival especially a) after childhood brain tumour. B) after early intervention and language acquisition in permanent childhood hearing impairment Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. PNET4 Outcome study - from about 2000 until at least 2010. In depth study of factors affecting quality of life after treatment of posterior fossa brain tumour 2005- 2010. 2. In preparation. Single outcome study for all children enrolled in brain tumour studies. Key publications (max 5) Glaser A, Kennedy C, Punt J, Walker D. Standardized quantitative assessment of brain tumour survivors treated within clinical trials. International Journal of Cancer, 1999, S12, 77-82. Kennedy CR, Leyland K. Comparison of screening instruments for disability and emotional/behavioural disorders with a generic measure of health-related quality of life in survivors of childhood brain tumours. International Journal of Cancer, 1999, S12, 106-11. Wilne SH, Ferris R, Nathwani A, Kennedy CR. The presenting features of brain tumours: a review of 200 cases. Archives of Disease in Childhood, 2006, 91:502-06. Kennedy CR, McCann D, Campbell MJ, Law C, Mullee M, Petrou S, Watkin P, Worsfold S, Yuen HM, Stevenson J. Early life detection of permanent hearing loss and subsequent language. The New England Journal of Medicine, 2006, 354: 2131-41. Bull KS, Spoudeas H, Yadegarfar G, Kennedy CR. Reduction of health status seven years after addition of chemotherapy to cranio-spinal irradiation for medulloblastoma: follow-up study of SIOP PNET 3 trial survivors on behalf of the CCLG (formerly UKCCSG). The Journal of Clinical Oncology, 2007, 25: 4239- 4245.

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Last Name Kingma First Name Annette Title PhD Degrees Registered Health Psychologist (GZ-BIG registratie); Pediatric Psychologist- specialist NIP (Kinder-en jeugdpsycholoog-specialist NIP); Clinical Psychologist- specialist NIP (Klinisch psycholoog-specialist NIP) Contact information tel. + 31 (0) 50-364213 Email address [email protected] Profession Pediatric Neuropsychologist (Kinderneuropsycholoog) Function Patient care in pediatric oncology, University lecturer and Post-doc research and project leader Main activities See above Focus of research Neuropsychological late- effects Attending SIOP Berlin 2008 Probably not Research projects (duration and start date) 1. Continuing longitudinal research on neuropsychological late-effects in children with leukemia or brain tumor; in collaboration with PhD students Key publications (max 5) Jansen NC, Kingma A, Schuitema A, Bouma A, Veerman AJ, Kamps WA. Neuropsychological outcome in chemotherapy-only-treated children with acute lymphoblastic leukemia. J Clin Oncol. 2008 Jun 20;26(18):3025-30. Kingma A, Van Dommelen RI, Mooyaart EL, Wilmink JT, Deelman BG, Kamps WA. No major cognitive impairment in young children with acute lymphoblastic leukemia using chemotherapy only: a prospective longitudinal study. J Pediatr Hematol Oncol. 2002 Feb;24(2):106-14. Kingma A, van Dommelen RI, Mooyaart EL, Wilmink JT, Deelman BG, Kamps WA. Slight cognitive impairment and magnetic resonance imaging abnormalities but normal school levels in children treated for acute lymphoblastic leukemia with chemotherapy only. J Pediatr. 2001 Sep;139(3):413-20. Neuropsychological Effects of Cancer Therapy: Cerebral Pathology, Cognitive Impairment, and School Re-Entry. In: Pochedly C, ed. Neoplastic Diseases of Childhood. Vol. 2. Switzerland: Harwood Academic Publishers; 1994: 1497-1520

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Last Name Klassen First Name Anne Title Associate Professor Degrees D.Phil Contact information Department of Pediatrics McMaster University 3A HSC 1200 Main Street W Hamilton, ON Canada L8N3 Z5 Email address [email protected] Profession Academic Researcher Function Project Leader and Collaborator Main activities Patient Care; Research, Both Focus of research Quality of Life; Psychometrics; Parents; Children Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Klassen A, Greenberg C, Barr R, Greenberg M, Chan Y. Developing a Framework and Indicators for Pediatric Oncology Services, Canadian Institutes of Health Research & Ontario Ministry of Health and Longterm Care & Pediatric Oncology Group of Ontario, $150,000, 2008 JUN – 2010 APR 2. Klassen A, Dix D, Pritchard S, Sung L, Raina P, Poureslami I, Shaw N. Immigrant families’ experience of care for their child with cancer. C17 Research Network - $92,536, 2007 APR – 2009 MAR 3. Klassen A, South Asian immigrant families’ experiences of care for their child with cancer. National Cancer Institute of Canada Research Grant - $139,067, 2007 JUL – 2009 JUN 4. Klassen A, O’Donnell M, Raina P, Dix D, Prichard S, Tucker L. Parents of children with cancer in BC: a study of factors related to their psychological wellbeing – Operating Grant. National Cancer Institute of Canada. - $226,842, 2004 JUL – 2008 JUN Key publications (max 5) Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O’Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Supportive Care in Cancer 2007; 15: 807-818. Klassen A, Klaassen R, Dix D, Pritchard S, O’Donnell M, Scott A, Sung L. Impact of caring for a child with cancer on parent’s quality of life. Journal of Clinical Oncology. In press Klassen A, Dix D, Cano SJ, Papsdorf M, Sung L, Klaassen RJ. Evaluating Family-Centered Service in Pediatric Oncology with the Measure of Processes of Care (MPOC-20). Child, Care Health and Development. In press. Klassen A, Strohm SJ, Maurice-Stam H, Grootenhuis M. Quality of life questionnaires for children and childhood cancer survivors: a comparison of available measures. Submitted to Psycho-oncology. Klassen A, Dix D, Yanofsky R, Klaassen R, Sung L. How do single parent families of children with cancer differ from two-parent families? Submitted to Pediatrics

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Last Name Korzeniewska First Name Justyna Title PhD Degrees Doctor Contact information The Children’s Memorial Health Institute Oncology Department Al. Dzieci Polskich 20 04-736 Warsaw Poland, tel. +48 22 815-75-86. Email address [email protected] Profession Psychologist Function psychologist in oncology department and researcher Main activities Patient care and research Focus of research neurocognitive; quality of life; late effects, Neurofibromatosis type 1, Nijmegen Breakage Syndrome (NBS). Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Since 2002 “Evaluation of Health and Psychological Status in Survivors of Childhood CNS Tumors”. 2. Since 2003 “Specific Behavioral Phenotype of Patients with Neurofibromatosis Type 1 (von Recklinghausen Disease)”. 3. Since 2004 “Dynamic of Mental Development of Patients with Nijmegen Breakage Syndrome – longitudinal study”. Key publications (max 5) J. Korzeniewska, M. Perek – Polnik, B. Dembowska – Babioska, M. Drogosiewicz, D. Perek „Vision Loss (Legal Blindness) as a Consequence of Brain Tumors: Functional Assessment and Analysis”. In: „Pediatric Blood & Cancer”, 2008, Vol. 10, Issue 3, pp. 496. B. Dembowska – Bagioska, D. Perek, A. Brożyna, M. Drogosiewicz, M. Perek – Polnik, O. Rutynowska, J. Korzeniewska „Evaluation of Health Status In Survivors of Childhood CNS Tumors Using Common Terminology Criteria for Adverse Events V 3.0 (CTC AE)”. In: „Pediatric Blood & Cancer”, 2008, Vol. 10, Issue 3, pp. 492. J. Korzeniewska, M. Perek – Polnik, B. Dembowska – Babioska, M. Drogosiewicz, D. Perek „Specific Behavioral Phenotype of Patients with Neurofibromatosis Type 1 (von Recklinghausen Disease”. In: „Pediatric Blood & Cancer”, 2008, Vol. 10, Issue 3, pp. 464. B. Dembowska – Bagioska, A. Brożyna, M. Drogosiewicz, M. Perek – Polnik, O. Rytynowska, I. Filipek, J. Korzeniewska, D. Perek „Late Effects of Childhood Central Nervous System (CNS) Tumors – Evaluation Using Common Terminology Criteria Adverse Events V 3.0 (CTC AE)”. In: „Pediatric Blood & Cancer”, 2007, Vol. 49, Issue 4, pp. 549. J. Korzeniewska, M. Drogosiewicz, B. Dembowska – Bagioska, D. Perek “Psychological Function in Survivors of Childhood CNS Germinoma”. In“Pediatric Blood & Cancer”, Vol. 47, Issue 4, 2006, pp. 493.

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Last Name Krivoy First Name Elena Avigail Title Clinical and Medical Psychologist Degrees Master Contact information Children Hospital, Rambam Health Care Campus, Haifa, Israel Email address [email protected] Profession Clinical and Medical Psychologist Function Chief Psychologist Department of Pediatric Hemato-Oncology Main activities Patient Care & Research, Focus of research Children; adolescents; siblings; parents; quality of life; palliative care; family functioning; late effect; care givers burn out. Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Quality of life in children getting chemotherapy their siblings and parents. March 2008. 2. Care givers burn out in a Pediatric Hemato-Oncology Services. January 2009. Key publications (max 5) Postovsky S, Moaed B, Krivoy E, Ofir R, Ben Arush MW. Practice of palliative sedation in children with brain tumors and sarcomas at the end of life. Pediatr Hematol Oncol. 2007 Sep;24(6):409-15 Peretz M, Goldberg H, Kuten A, Meller I, Krivoy E, et al. Long Term Survivors in children suffering from cancer. Harefuah 2003; 140: 95-100. Psychosocial Aspects of Pediatric Oncology Editors: S. Kreitler, M. Weyl Ben Arush (2004). “Psychological Intervention with the Dying Child” (S.Kreitler and E. Krivoy)

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Last Name Krull First Name Kevin Title Associate Professor Degrees Ph.D. Contact information St. Jude Children's Research Hospital 332 N. Lauderdale St. MS 735 Memphis, TN 38105-2794 Email address [email protected] Profession Neuropsychologist Function Faculty researcher, supervisor, project leader Main activities Research with limited patient care Focus of research Neurocognitive outcomes of pediatric ALL, genetic mediators/moderates of late-effects, . Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Risk of Neurocognitive impairment long-term survivors of pediatric ALL. 01 Jan 2008 to present. 2. Neurocognitive functions in long-term survivors of ALL exposed to corticosteroids. 01 Oct 2007 to present. 3. Remote neurocognitive assessment in adult survivors of childhood cancer. 01 Apr 2008 8 to present. 4. Long-term Neurological, Neurocognitive, and Cerebrovascular Outcomes after CNS Radiation for Acute Lymphoblastic Leukemia. 01 Jul 2007 to present. Key publications (max 5) Krull KR, Okcu MF, Potter B, Jain N, Dreyer Z, Kamdar K. Brouwers P. Screening for neurocognitive divergence in pediatric cancer long-term survivors. Journal of Clinical Oncology. In press. Krull KR, Brouwers P, Jain N, Zhang L, Bomgaars L, Dreyer Z, Mahoney D, Bottomley S, Okcu MF. Folate pathway genetic polymorphisms are related to attention disorders in childhood leukemia survivors. Journal of Pediatrics. 2008; 152(1): 101-5. Jain N, Krull KR, Brouwers P, Chintagumpala MM, Woo SY. Neuropsychological outcome following intensity-modulated radiation therapy for pediatric medulloblastoma. Pediatric Blood and Cancer. 2008 Apr 17. Epub. Moore IM, Miketova P, Hockenberry M, Krull KR, Pasvogel A, Carey M, Kaemingk, K. Methotrexate- induced alterations in Beta-oxidation correlate with cognitive abilities in children with acute lymphoblastic leukemia. Biological Research for Nursing. 2008; 9(4): 311-9. Hockenberry M, Krull KR, Moore IM, Gregurich M, Casey ME, Kaemingk K. Longitudinal evaluation of fine motor skills in children with leukemia. Journal of Pediatric Hematology & Oncology. 2007; 29(8): 535-9.

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Last Name Last First Name Bob F. Title Prof.Dr. Degrees PhD Contact information Academic Medical Center Meibergdreef 9 Amsterdam the Netherlands Email address [email protected] Profession Clinical Psychologist Function Director of Pediatric Psychosocial Department Main activities Patient Care; Research, Both Focus of research Coping; Family dynamics; Effectiveness of interventions Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Effectiveness of a cognitive-behavioural group intervention in children and adolescents treated for cancer (ongoing) Key publications (max 5) Last BF & Grootenhuis MA (1998). Emotions, coping, and the need for support in families of children with cancer: a model for psychosocial care. Patient Educ Counsel, 33, 169-179. Houtzager, B.A., Grootenhuis, M.A., Caron, H.N., Last, B.F. (2004). Quality of life and psychological adaptation in siblings of pediatric cancer patients, two years after diagnosis Psycho-Oncology, 13, 499- 511. Last, BF, Grootenhuis, MA, & Eiser, C (2005). International comparison of contributions to psychosocial research on survivors of childhood cancer: past and future considerations. J of Pediatric Psychology. Jan-Feb; 30(1):99-113. Maurice-Stam H, Oort FJ, Last BF, Brons PPT, Caron HN, Grootenhuis MA. Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment. Pediatric Blood & Cancer. May 2008, Volume: 50 Issue: 5 Pages: 1047-1051 Last BF, Stam H, Onland-van Nieuwenhuizen AM, Grootenhuis M. Positive effects of a psycho- educational group intervention for children with a chronic disease: First results. Patient Educ Couns. 2007 Jan;65(1):101-12.

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Last Name Lindahl Norberg First Name Annika Title Degrees PhD Contact information Childhood Cancer Research Unit Q6:05 Astrid Lindgren Children's Hospital SE-171 76 Stockholm Sweden phone: +46 8 517 719 50 Email address [email protected] Profession Psychologist; CBT-therapist (basic) Function Post-doc researcher, project leader Main activities Research; some patient care Focus of research Parents; Brain tumour survivors; Chronic strain and stress; Traumatic stress Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Chronic stress and burnout in parents: start 2005 2. Post-treatment life of parents of brain tumour survivors: start 2005 3. Brain tumour survivors – Child cognitive training & parental coaching (together with I. van’t Hooft) start 2007 4. Neuropsychologic and psychosocial sequelae in brain tumour survivors (together with I. van’t Hooft) start 2007 Current involvement in other projects: 5. Childhood cancer – psychological consequences for parents (project leader K.K. Boman) start 1998 6. Posttraumatic stress in parents (project leader L. von Essen) start 2002 Key publications (max 5) Lindahl Norberg, A. & Steneby, S. (in press) Parents of children surviving brain tumour: A happy ending and a rough beginning. European Journal of Cancer Care Lindahl Norberg, A. & Boman, K. K. (2008) Parent distress in childhood cancer: A comparative evaluation of posttraumatic stress, depression and anxiety. Acta Oncologica 47(2), 267-274 Lindahl Norberg, A. (2007) Burnout in parents of children surviving brain tumour. Journal of Clinical Psychology in Medical Settings, June 14(2), 130-137 Lindahl Norberg, A. & Boman, K. K. (2007) Parents’ perceptions of support when a child has cancer: a longitudinal perspective. Cancer Nursing, 30(4), 294-301 Lindahl Norberg, A., Lindblad, F., & Boman, K. K. (2005). Coping strategies in parents of children with cancer. Social Science and Medicine, 60(5), 965-975.

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Last Name Luca, de First Name Cinzia Title Ms Degrees Masters/PhD (Clinical Neuropsychology) Contact information Royal Children's Hospital Psychology Department 1st floor, South East Building Flemington Road, Parkville 3052 Melbourne, VIC AUSTRALIIA (+61 03) 9345 5867 Email address [email protected] Profession Neuropsychologist Function Neuropsychological assessment of children undergoing treatment for childhood cancer. Main activities Patient assessments. Research. Focus of research Neurocognitive sequelae of childhood cancer. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Attention dysfunction in children with cancer. (Jan 2008). 2. Monitoring cognition over time, and exploring the contribution of developmental and psychosocial factors to outcome. (July 2008). Key publications (max 5) Book chapter: Neuropsychological Impact of Treatment of Brain Tumors (in press).

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Last Name Maeda First Name Miho Title Professor Degrees MD,PhD Contact information Email address [email protected] Profession Pediatric Oncologist Function MD,Ph D Main activities Both Focus of research Late Effects Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Establishment of national follow-up system for childhood cancer survivors in Japan Key publications (max 5) Kaizu K, Maeda M, Fukunaga Y. Factors affecting final height and growth hormone provocation tests in survivors of childhood acute lymphoblastic leukemia who underwent cranial irradiation. Jpn J Pediatr Hematol 22 (2):119-125, 2008 Miho Maeda, Akio Tsuda, Shingo Yamanishi, Yoko Uchikoba, Yoshitaka Fukunaga, Hajime Okita, Jun-ichi Hata. Ewing Sarcoma/Primitive Neuroectodermal Tumor of the kidney in a Child. Pediatr Blood Cancer 50: 180-183, 2008 Ueda T, Ito T, Maeda M, Fukunafa Y. Massive periosteal reaction a presenting feature of acute megakaryocytic leukemia. Pediatr International 49: 1015-1017、2007 Akira Kikuchi, Miho Maeda, et al. Moyamoya syndrome following childhood acute lymphoblastic leukemia. Pediatr Blood Cancer 48(3):268-272, 2007 Hamada H, Ohkubo T, Maeda M, Ogawa S. Evaluation of cardiac reserved function by high-dose dobutamine-stress echocardiography in asymptomatic anthracycline-treated survivors of childhood cancer. Pediatr Int. 48:313-20, 2006.

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Last Name Makhoul- khoury First Name Siwar Title Mrs. Degrees M.S.W. Contact information Pediatric hematology- oncology department Meyer Children’s Hospital Rambam Health Care Campus Email address [email protected] Profession Social worker Function Main activities Patient Care & Research Focus of research Adolescents, coping strategies, parenthood, Quality of life Attending SIOP Berlin 2008 Yes Research projects (duration and start date) Key publications (max 5) Parental style, preserved support and adjustment of Jewish and Arab adolescent recovering from childhood cancer (Siop 2008)

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Last Name Martiniuk First Name Alexandra LC Title Dr Degrees MSc PhD Contact information The George Institute For International Health at University of Sydney Email address [email protected] [email protected] Profession Epidemiologist (previously psychological/clinic & community support) Function Senior Research Fellow, Assistant Professor Faculty of Medicine Main activities Currently research (previously patient and family support) Focus of research Global health (adolescent health) Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. At SIOP to represent COCA-I (Children’s Oncology Camping Association International) Key publications (max 5) Martiniuk AL, Speechley KN, Secco M, Campbell MK, Donner A. Evaluation of an epilepsy education program for Grade 5 students: a cluster randomized trial. Epilepsy Behav. 2007 Jun;10(4):604-10. Epub 2007 Apr 20. Martiniuk AL, Speechley KN, Secco M, Karen Campbell M. Development and psychometric properties of the Thinking about Epilepsy questionnaire assessing children's knowledge and attitudes about epilepsy. Epilepsy Behav. 2007 Jun;10(4):595-603. Epub 2007 Mar 7. Martiniuk AL. Camping programs for children with cancer and their families. Support Care Cancer. 2003 Dec;11(12):749-57. Epub 2003 Oct 1. Review. Martiniuk AL, O'Connor KS, King WD. A cluster randomized trial of a sex education programme in Belize, Central America. Int J Epidemiol. 2003 Feb;32(1):131-6. Martiniuk AL, Lee CM, Lawes CM, Ueshima H, Suh I, Lam TH, Gu D, Feigin V, Jamrozik K, Ohkubo T, Woodward M; Asia-Pacific Cohort Studies Collaboration. Hypertension: its prevalence and population- attributable fraction for mortality from cardiovascular disease in the Asia-Pacific region. J Hypertens. 2007 Jan;25(1):73-9.

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Last Name Massimo First Name Luisa M. Title Prof. Dr. Degrees Director Emeritus Contact information myself Email address luisamassimo @ospedale-gaslini.ge.it Profession Professor Emeritus Function Director Emeritus Main activities Patient Care; Research, Both, Expert of EU and INTAS Focus of research Psycho-Oncology, Psychosociology Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. The immigrant sick child in hospital: the experience of mothers (2 years); Needs and expectations of adolescents with cancer (2 years). Key publications (max 5) Massimo LM, Wiley TJ, Caprino D: Health emigration: a challenge in pediatric oncology. J Child Health Care. 2008;12:106-15. Massimo LM, Wiley TJ: Young siblings of children with cancer deserve care and a personalized approach. Pediatr Blood Cancer. 2008;50:708-710. Massimo LM, Zarri DA: Drawings: a narrative approach for children with cancer. Ann N Y Acad Sci. 2006;1089:xvi-xxiii. Caprino D, Wiley TJ, Massimo LM: Childhood cancer survivors in the dark. J Clin Oncol. 2004,22:2748- 2750.

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Last Name Maurice-Stam First Name Heleen Title dr Degrees PhD Contact information Emma Children’s Hospital Academic Medical Center Psychosocial Pediatric Department, G8-224 Meibergdreef 9 1105 AZ Amsterdam The Netherlands Email address [email protected] Profession health scientist Function post-doc researcher Main activities research Focus of research QoL, psychosocial late effects, course of life/developmental milestones, interventions Childhood cancer survivors (children and young adults) Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Effect of psycho-educational interventions for childhood cancer survivors in progress: 2. psychosocial late effects in childhood cancer survivors 3. measuring survivor-specific QoL 4. effect of ambient experience on pain and fear in pediatric oncology 5. use of serious gaming to improve health behaviour in pediatric oncology Key publications (max 5) Stam H, Grootenhuis MA, Last BF. The course of life of survivors of childhood cancer. Psycho-oncology 2005; 14:227-238. Maurice-Stam H, Oort FJ, Last BF, Brons PPT, Caron HN, Grootenhuis MA. Longitudinal assessment of HRQoL in preschool children with non-CNS cancer after the end of successful treatment. Pediatric Blood & Cancer 2008; 50(5):1047-1051. Maurice-Stam H, Oort FJ, Last BF, Brons PPT, Caron HN, Grootenhuis MA. School-aged children after the end of successful treatment of non-CNS cancer: Longitudinal assessment of Health-Related Quality of Life, anxiety and coping. European Journal of Cancer Care, in press Maurice-Stam H, Oort FJ, Last BF, Grootenhuis MA. Emotional functioning of parents of children with cancer: the first five years of continuous remission after the end of treatment. Psycho-Oncology 2008; 17:448-450. Maurice-Stam H, Oort FJ, Grootenhuis MA, Last BF. A predictive model of Health-related Quality of Life in young adult survivors of childhood cancer. European Journal of Cancer Care, in press

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Last Name Medin First Name Gabriela Title Mrs Degrees Phd student Contact information Hospital General Universitario Gregorio Marañón Hemato-oncology Unit Madrid Spain Email address [email protected] Profession Psychologist Function Researcher and patient care Main activities Both Focus of research adolescents; quality of life; post-traumatic stress or growth; interventions; late effects. Palliative care Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. ALL survivors psychosocial long term effects. Qualitative study. Finished 2004 Thesis disertation in process. 2. Adolescents survivors and quality of life. Cross sectional study. Finishing data analysis. 3. Psychosocial issues in sickle cell disease. Longitudinal study. Collecting data. 2007 Key publications (max 5) “Medidas no farmacológicas de control del dolor y otros síntomas en cancer pediátrico”. Mendez, T, Medin, G En Cuidados Paliativos en ninos Editado por Dr Marcos Gomez Sancho. Gafos. Canarias. España. 2007. “Pediatric Issues: paliative care in the developing Word. Principles and practice” Dussel V, Medin G En Bruera, De lima et al “Palliative Care in the developing world. Principles and practice”. Internacional Association for Hospice and Paliative Care con auspicio de la OPS. 2004 Procedural pain in children. Oral presentation. XXXVIII SIOP meeting Pediatric Blood and cancer Vol Issue 2006. Adolescents survivors of childhood cancer. Psychosocial evaluation and Quality of life. Medin G, Belendez C, Cela E, Galarón P, Bravo R, Cantalejo M A. XXXVIII SIOP meeting Pediatric Blood and cancer Vol Issue 2006

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Last Name Meijer-van den Bergh First Name Esther Title MA Degrees MA Contact information Radboud University Medical Center, Dept. Medical Psychology 818 Child Psychology PO box 9101 6500 HB Nijmegen 0031-24-3613947 Email address [email protected] Profession Clinical psychologist/psychotherapist Function Coordinator psycho-social care Main activities Patient Care, Research Focus of research Adjustment, coping, CBT, palliative care Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. ALL-10 treatment for children with acute lymfoblastic leukemia: a study on adjustment and quality of life and it’s determinants. Dutch multicenter study (UMCN/VUMC), DCOG approved. 0kt 2006-okt 2009 2. Participating in QLIC-ON study AMC. Duration: 4-5 years. Start date: September 2005. Aim is to determine whether providing Patient Reported Outcome (PRO) on Health Related Quality of Life (HRQOL) help pediatric oncologists to identify and discuss HRQOL problems in children with cancer. Key publications (max 5): Parental cognitions regarding the oncological disease of their child: the illness cognition questionnaire- parent version (icq-p). EMM Meijer-van den Bergh, PM Hoogerbrugge, AWM Evers, CM Verhaak, poster abstract SIOP conference Geneva, 2006 Psychosocial adjusment of children at the start of their all-10 treatment; preliminairy results of a dutch multicentre study. EMM Meijer-van den Bergh, PM Hoogerbrugge, CM Verhaak, poster abstract SIOP conference Mumbai, 2007 Mavinkurve-Groothuis A, Meijer-vd Bergh E, Brouwer H, Enk G: Patiënt delay due to embarrassment and fear in two adolescents with a malignant tumor. Pediatric Blood and Cancer, vol 50, 5, may 2008, p1083.

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Last Name Michel First Name Gisela Title PhD Degrees MSc in Clinical and social psychology, philosophy PhD in Clinical psychology Contact information Dept of Psychology University of Sheffield Western Bank Sheffield, S10 2TP UK Email address [email protected] Profession Psychologist Function Post-doc Main activities Research Focus of research Follow-up care in childhood cancer survivors Late effects in childhood cancer survivors Quality of life in childhood cancer survivors Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Follow-up care in childhood and young adult cancer survivors: Perspectives of survivors, oncologists and general practitioners (09/2007-12/2008) 2. Late outcome in childhood cancer survivors in Switzerland (01/2006-12/2008) Key publications (max 5) Michel, G., von der Weid, N. X., Zwahlen, M., Strippoli, M.-P. F., Redmond, S.& Kuehni, C. (2008). Incidence of childhood cancer in Switzerland: the Swiss Childhood Cancer Registry. Pediatric Blood and Cancer, 50(1), 46-51. Michel, G., von der Weid, N. X., Zwahlen, M., Adam, M., Rebholz C. E. & Kuehni, C. (2007). The Swiss Childhood Cancer Registry: rationale, organisation and results for the years 2001-2005. Swiss Medical Weekly. 137(35-36), 502-509.

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Last Name Mostert First Name Saskia Title Degrees Contact information Pediatric Hematology Oncology Division, Department of Pediatrics, VU University Medical Center, Amsterdam, the Netherlands Email address [email protected] Profession Medical doctor Function PhD researcher Main activities Research Focus of research Childhood acute lymphoblastic leukemia treatment; developing country; children, parents, health-care providers. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Compliance with childhood acute lymphoblastic leukemia treatment in Indonesia. Start date: 2002 Key publications (max 5) Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJP. Influence of Socioeconomic Status on Childhood Acute Lymphoblastic Leukemia Treatment in Indonesia. Pediatrics 2006; 118: 1600-1606. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJP. Attitude of health-care providers toward childhood leukemia patients with different socio-economic status Pediatric Blood & Cancer 2008; 50: 1001-1005. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJP. Does aid reach the poor? Experiences of a childhood leukaemia outreach programme. European Journal of Cancer 2008; In press. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJP. Parental Experiences of Childhood Leukemia Treatment in Indonesia. Journal of Pediatric Hematology/ Oncology 2008; In press. Sitaresmi MN, Mostert S, Gundy CM, Sutaryo, Veerman AJP. Health-care providers’ compliance with childhood acute lymphoblastic leukemia protocol inIndonesia. Pediatric Blood & Cancer 2008; In press.

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Last Name Mukherjee First Name Suzanne Title Dr Degrees PhD Health Sciences, MSc Child Development, BSc (Hons) Psychology Contact information Social Policy Research Unit, University of York, Heslington, York, United Kingdom, Y026 6JG. Tel +44 (0)1904 321950 - Fax +44 (0)1904 321953 - Text/voice (0)1904 321951 Email address [email protected] Profession Psychologist Function Post- doc researcher Main activities Research Focus of research Stress and burnout in pediatric and adolescent oncology staff; the service support needs of children, young people and parents. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. ‘Development and validation of a measure of work-related stressors for pediatric and adolescent oncology staff’. January 2009 - March 2010. 2. ‘Evaluating models of care closer to home for children and young people who are ill’. April 2007 - September 2009. Key publications (max 5) Mukherjee S., Beresford B., Sloper P., and Glaser A. (Submitted) Stress and burnout in pediatric oncology staff: A review of the literature. Mukherjee S., Sloper P., Beresford B., Lund P. and Greco V. (2006) A Resource Pack: Developing a key worker service for families with a disabled child’, 2nd Edition, CCNUK. Mukherjee S., Sloper P. and Lewin R. (2002) The meaning of parental illness to children: The case of inflammatory bowel disease. Child: Care, Health and Development, 28 (6): 479-485. Mukherjee S., Sloper P., and Turnbull A. (2002) An insight into the experiences of parents with inflammatory bowel disease. Journal of Advanced Nursing, 37 (4): 355-363. Mukherjee S., Lightfoot J., and Sloper P. (2002) Communicating about pupils in mainstream school with special health needs: the NHS perspective. Child: Care, Health and Development, 28 (1): 21-27.

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Last Name Nichelli First Name Francesca Title Degrees Contact information Ospedale S. Gerardo, Monza Email address [email protected] Profession Psychologist Function Clinical psychologist Main activities Patient Care; Research Focus of research Neuropsychology, quality of life, sibilings Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Behavioural effects of dexametazone during the induction therapy for ALL (3 years, started in 2004); long term quality of life in sibilings of children with ALL (in preparation) Key publications (max 5) ISPACC (International Study Group on Psychosocial Aspects of Childhood Cancer.) Neurocognitive function in a longitudinal study in children affected by ALL: an international study (in publication). Riva D, Aggio F, Vago C, Nichelli F, Andreucci E, Paruta N, D'Arrigo S, Pantaleoni C, Bulgheroni S. Cognitive and behavioural effects of migraine in childhood and adolescence. Cephalalgia. 2006 May;26(5):596-603. Nichelli F, Scala G, Vago C, Riva D, Bulgheroni S. Age-related trends in Stroop and conflicting motor response task findings. Child Neuropsychol. 2005 Oct;11(5):431-43. Riva D, Avanzini G, Franceschetti S, Nichelli F, Saletti V, Vago C, Pantaleoni C, D'Arrigo S, Andreucci E, Aggio F, Paruta N, Bulgheroni S. Unilateral frontal lobe epilepsy affects executive functions in children. Neurol Sci. 2005 Oct;26(4):263-70. Bulgheroni S, Nichelli F, Erbetta A, Bagnasco I Riva D. Verbal dichotic listening and manual performance in children with congenital unilateral brain lesions. Neuropsychology. 2004 Oct;18(4):748-55. Riva D, Saletti V, Nichelli F, Bulgheroni S. Neuropsychologic effects of frontal lobe epilepsy in children. J Child Neurol. 2002 Sep;17(9):661-7.

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Last Name Nolf First Name Nathalie Title Degrees Contact information Dept. Ped. Haemato-Oncology Univ. Hospital Ghent De Pintelaan 185 9000 Gent Belgium +32 (0) 9 332.24.63 Email address Nathalie. [email protected] Profession Psychologist – Behaviour Therapist Function Main activities Patient Care; Focus of research Attending SIOP Berlin 2008 NO Research projects (duration and start date) Key publications (max 5)

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Last Name Okcu First Name Fatih Title Assistant Professor Degrees MD, MPH Contact information 6621 Fannin Street, CC1510.00, Houston TX 77030 Tel: 832-822-1511, Fax: 832-825-1503 Email address [email protected] Profession Pediatric Hematology/Oncology, Physician Scientist Function Main activities Patient Care and Research Focus of research Association between genetic polymorphisms and neuropsychological outcomes Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Neuropsychological impairment in leukemia survivors and folate pathway polymorphisms. Start Date: 2004 2. Neuropsychological impairment in medulloblastoma survivors and free radical scavenging polymorphisms. Start Date: 2004 Key publications (max 5) Krull KR, Brouwers P, Jain N, Zhang L, Bomgaars L, Dreyer Z, Mahoney D, Bottomley S, Okcu MF. Folate pathway genetic polymorphisms are related to attention disorders in childhood leukemia survivors. J Pediatr. 2008;152:101-105. Narahmani N, Carpentieri S, Li XN, Wang T, Cao Y, Howe L, Kilburn L, Chintagumpala M, Lau C, Okcu MF. Glutathione S-Transferase M1 and T1 Polymorphisms May Predict Adverse Effects After Therapy in Children with Medulloblastoma (in press Neuro-Oncology)

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Last Name Olthof First Name Anita Title Mrs. Degrees Bachelor of Arts Therapies Contact information Heemsteedse Dreef 168 2102 KS Heemstede The Netherlands Email address [email protected] Profession Art therapist Function Freelance Main activities Patient Care Focus of research Emotion regulation Attending SIOP Berlin 2008 Yes Research projects (duration and start date) In preparation Key publications (max 5)

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Last Name Oppenheim First Name Daniel Title MD, PhD Degrees Senior psychiatrist Contact information Dept of pediatric oncology Institut Gustave Roussy 94805 Villejuif France Email address [email protected] Profession Psychiatrist and psychoanalyst Function Main activities Both Focus of research All the aspects of the child’s and parents’ experience of cancer. Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Socio-cultural and family history diversity among the families of children treated for a cancer, and their consequences. 2. The experience of going through phase I-II trials by the children and the parents. 3. Ethical aspects of pediatric oncology Key publications (max 5) Oppenheim D. The child’s subjective experience of cancer and the relationship with parents and caregivers. In Psychosocial aspects of pediatric oncology. S. Kreitler and M Weyl Ben Arush eds. Wiley, Chichester UK 2004, 111-138; Oppenheim D, Pittolo V, Gericot C, Grill J, Hartmann O, Dauchy S. A writing workshop for children with cancer. Arch Dis Child 2008; 93: 708-709; Oppenheim D, Brugières L, Corradini N, Vivant F, Hartmann O. An ethics dilemna: when parents and doctors disagree on the best treatment for a child. Bull Cancer 2004 ; 91: 735-738; Oppenheim, D., Brugières, L., Chompret, A., and Hartmann, O. The psychological burden inflicted by multiple cancers in Li-Fraumeni families: five case studies. J Genet Counseling, 10: 169-183, 2001; Oppenheim D, Valteau Couanet D, Vasselon S, Hartmann O. How do parents perceive high-dose chemotherapy and autologous stem cell transplantation for their children. Bone Marrow Transplantation, 2002, 30 (1) ; 35-39

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Last Name Ottensmeier First Name Holger Title Dr. rer. nat. Degrees Contact information Children´s University Hospital, Würzburg Josef-Schneider Strasse 2 97080 WÜRZBURG Tel. 0931 201 27755 Fax. 0931 201 27772 Email address [email protected] Profession Neuropsychologist / Psychotherapist Function Main activities Patient Care; Research, Both Focus of research Late effects in brain tumors Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Two projects 2007 – 2009 Key publications (max 5) Short version of intelligence testing of children, Ottensmeier, H., Galley, N., Rutkowsky, S., Kuehl, J. (2006) Kindheit und Entwicklung, 15(2), 100-106 Treatment of Early Childhood Medulloblastoma by Postoperative Chemotherapy Alone, Stefan Rutkowski, M.D., Udo Bode, M.D., Frank Deinlein, M.D., Holger Ottensmeier, Ph.D. et al. (2005) New England Journal of Medicine, 352, 978-986

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Last Name Patenaude First Name Andrea Farkas Title Director, Psycho-Oncology Research in the Department of Pediatric Oncology, Dana-Farber Cancer Institute, Associate Professor, Harvard Medical School Degrees Ph.D. Contact information Dana-Farber Cancer Institute 44 Binney Street Boston MA 02445 USA Email address [email protected] Profession Psychologist Function Project leader Main activities Research Focus of research Psychosocial impact of cancer genetic testing; survivorship Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Attitudes towards genetic testing and genomic research among adult survivors of pediatric cancer – 2006-2009; 2. Parent communication to minor children regarding mother’s BRCA1/2 test result: 2008-2011; 3. Social functioning of children with brain tumors – 2004-2008. Key publications (max 5) Patenaude AF. Genetic Testing for Cancer: Psychological Approaches to Helping Patients and Families. Forward by Francis Collins, M.D., Ph.D. American Psychological Association Books, 2005. Weiner L, Pao M, Kazak AE, Kupst MJ, Patenaude AF, and Holland JC. Quick Reference for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Pediatric Cancer Symptom Management. American Psycho-Oncology Society, in press. Patenaude AF & Kupst MJ (2005). Psychosocial functioning in pediatric cancer. Journal of Pediatric Psychology, 30, 9-29. Patenaude AF. (2003) Pediatric psychology training and genetics: What will21st century pediatric psychologists need to know? J Ped Psych. 28, 135-145. Patenaude AF, Guttmacher AE, & Collins FS. (2002) Cancer genetic testing and psychology: New roles, new responsibilities. Amer Psychol, 57, 271-282.

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Last Name Paredes Guerra First Name Ana Maria Gloria Title Degrees Contact information Rebagliati Hospital ESSALUD Lima Peru Email address [email protected] Profession Oncology Pediatrician Function Main activities Patient Care; Focus of research Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Histories for children Project leader: Paredes guerra gloria Project: building one hostelling for cancer children patients with the selling of the histories. I started this project in 1 july 2007, I created 20 histories, the 5 first histories I am selling on the bookstore, my patients helps me to sell around of my country, because the building of hostelling is very important for quality of live during their treatment. Key publications (max 5)

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Last Name Palmer First Name Shawna Title Research Psychologist Degrees Ph.D. Contact information Dept of Behavioral Medicine, St. Jude Children's Research Hospital Email address [email protected] Profession Psychologist Function Co-Investigator; Section Coordinator, Cancer Control Main activities Research Focus of research Neurocognitive, family functioning, late effects, interventions Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Treatment of patients with newly diagnosed medulloblastoma, surpratentorial primitive neuroectodermal tumor, or atypical teratoid rhabdoid tumor (2003; 6 years). Includes randomized intervention study for remediation of decoding and underlying cognitive skills. Key publications (max 5) Palmer SL & Leigh LD. Adolescent and young adult survivors of pediatric brain tumors: Risk-based management of outcomes and intervention. European Journal of Oncology Nursing, in press. Palmer SL, Reddick WE, & Gajjar A. Understanding the cognitive impact on children who are treated for medulloblastoma. Journal of Pediatric Psychology, 32(9):1040-9, 2007. Mulhern RK, Palmer SL, Merchant TE, Wallace-Jones D, Kocak M, Kun LE, Brouwers P, Krull K, Chintagumpala M, Stargatt R, Ashley DM, Tyc VL, Gajjar A. Neurocognitive consequences of risk- adapted therapy for childhood medulloblastoma. Journal of Clinical Oncology, 23:5511-5519, 2005. Palmer SL, Gajjar A, Reddick WE, Glass JO, Kun LE, Wu S, Xiong X, Mulhern RK. Predicting intellectual outcome among children treated with 35-40 Gy craniospinal irradiation for medulloblastoma. Neuropsychology, 17(4):548-555, 2003. Palmer SL, Reddick WE, Glass JO, Goloubeva O, Gajjar A, Mulhern RK. Decline in corpus callosum volume among pediatric patients with medulloblastoma: A longitudinal MR image study. American Journal of Neuroradiology, 23:1088-1094, 2002. Mulhern RK, Palmer SL, Reddick WE, Glass JO, Kun LE, Taylor J, Langston J, Gajjar A. Risks of young age for selected neurocognitive deficits in medulloblastoma are associated with white matter loss. Journal of Clinical Oncology, 19:472-479, 2001.

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Last Name Patel First Name Sunita Title Assistant Professor of Pediatrics; Director, Behavioral Research in Peds Degrees Ph.D Contact information City of Hope National Medical Center Building #173, 1500 E. Duarte Road Duarte, CA. 91010-3000 Tel 626-301-8426 Fax 626-301-8985 Email address [email protected] Profession Clinical Neuropsychologist Function Main activities Patient Care; Research, Both Focus of research Neurocognitive and quality of life outcomes and interventions Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. RO3 CA130731-01 (PI: S. Patel) 04/01/08 – 03/30/10 NIH- NCI National Cancer Institute. A behavioral trial for parents of childhood cancer survivors with neurobehavioral late effects. The study pilots a randomized controlled behavioral trial to empirically evaluate the impact of a parent intervention for the primary purpose of improving outcomes in children with neurobehavioral late effects following cancer diagnosis and treatment. 2. RO1 CA119196-01 (PI: Parsons) 6/01/07 – 5 /30/11 NIH-NCI HSCT-CHESS to Enhance Hematopoietic Transplant Recovery Major goals are to develop an interactive, web-based, health information and support system for HSCT patients and families. This will be a transportable, transplant specific module of the well-established Comprehensive Health Enhancement Support System (HSCT-CHESS). Project will conduct a randomized controlled trial of 190 parents at 4 cancer centers to evaluate the impact of HSCT-CHESS on HRQOL, comparing it to standard care over a six-month intervention period within the first year of HSCT. Role: Co-investigator and site PI 3. P20 CA118775 (Kane – Patel & Dennis) 10/1/08-9/31/10 NCI Parenting behaviors in Latino childhood cancer survivors at risk for neurobehavioral late effects. Key publications (max 5) Patel S, K., Carlson-Green B: Commentary: Towards greater integration and specificity in conceptual models of neurocognitive functioning in childhood cancer survivors. Journal of Pediatric Psychology, special issue: Surviving Pediatric Cancer: Research Gains and Goals, 30(1), 85-89, 2005. Meeske, K., Patel, S. K., Palmer, S., Nelson, M., Parow, A. Factors associated with health related quality of life in pediatric cancer survivors, Pediatric Blood and Cancer. 49(3), 298-305, 2007. Patel, S.K., Lai-Yates, J., Anderson, J., Katz, E. Attention dysfunction and parent reporting in children with brain tumors. Pediatric Blood and Cancer. 49(7), 970-975, 2007. Nathan, P., Patel, S., Dilley, K., Goldsby, R., Harvey, J., Jacobsen, C., Kadan-Lottick, N., McKinley, K., Millhan, A., Moore, I., Okcu, M.F., Woodman, C., Brouwers, P., Armstrong, D. Guidelines for Identification of, Advocacy for, and Intervention of, Neurocognitive Problems in Survivors of Childhood Cancer: A Report from the Children’s Oncology Group. Archives of Pediatric and Adolescent Medicine. 161(8), 798-806, 2007. Butler, R., Copeland, D., Fairclough, D., Mulhern, R., Katz, E., Kazak, A., Noll, R., Patel, S., Sahler, O. A Multicenter, Randomized Clinical Trial of a Cognitive Remediation Program Directed Towards Childhood Survivors of a Pediatric Malignancy, Journal of Consulting and Clinical Psychology, 76(3), 367-378, 2008.

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Last Name Paulides First Name Marios Title Dr. med. Degrees Dr. med. Contact information University Hospital for Children and Adolescents Loschgestr. 15 91054 Erlangen Email address [email protected] Profession Physician Function Post-doc researcher Main activities Patient care and research Focus of research Late effects Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Late Effects Surveillance System Key publications (max 5) Krappmann P, Paulides M, Stöhr W, Ittner E, Plattig B, Nickel P, Lackner H, Schrappe M, Janka G, Beck JD, Langer T: Almost normal cognitive function in patients during therapy for childhood acute lymphoblastic leukemia without cranial irradiation according to ALL-BFM 95 and COALL 06-97 protocols: results of an Austrian-German multicenter longitudinal study and implications for follow-up. Pediatr Hematol Oncol 24:101-9, 2007

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Last Name Pitillas First Name Carlos Title Mr. Degrees M.A. Degree in Psychoanalytic Psychotherapy Contact information Hospital Madrid-Montepríncipe Madrid Spain. Email address [email protected] Profession Psychologist Function Ph.D. Student Main activities Both Patient Care and Research, Focus of research Posttraumatic stress; Use of child psychotherapy techniques (play therapy, etc.); Identity in survivorship. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Assessment of posttraumatic stress (starts after July, 2008). Subjective experience of children affected by cancer (by means of comprehensive of play therapy and psychotherapy techniques) (started December 2007). Key publications (max 5)

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Last Name Pletschko First Name Thomas Title Mag. Bakk Degrees Contact information Univ. Clinic for pediatric and adolescent medicine Medical University of Vienna Währinger Gürtel 18-20 A-1090 Wien Austria Email address [email protected] Profession clinical psychologist Function PhD-student Main activities Patient Care & Research (Both) Focus of research Neurocognitive performance after neuro-oncologic diseases Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Development of an ICF-based neuropsychological assessment strategy for the assessment of executive functions in pediatric patients with medulloblastoma (duration: 3 years, start: Sept. 2007) Key publications (max 5) Rupp, Pletschko, Leiss, Formann & Slavc (2008). Do we still need IQ Scores? Misleading interpretations of neurocognitive outcome in pediatric patients with medulloblastoma. Submitted Abstract (SIOP 2008) Leeb, Gmoser, Pletschko, Leiss, Arendasy & Slavc (in prep.). How do children after neurooncologic diseases cope school? A rating of parents on an ICF-based scale. Gmoser, Leeb, Leiss, Pletschko, Arendasy & Slavc (in prep.). How do children after neurooncologic diseases cope school? A rating of afflicted children on an ICF-based scale. Schieber, Pletschko, Leiss, Arendasy & Slavc (in prep.). Executive Functions in children with neurooncologic diseases: How well do test results predict behavioral problems?

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Last Name Pöder First Name Ulrika Title Mrs Degrees PhD Contact information information Dept of Public Health and Caring Sciences Uppsala Science Park Uppsala University SE-75183 Uppsala Sweden Email address [email protected] Profession Registered nurse, specialized in intensive care/neurosurgical care Function Lecturer (Assistant professor) at Uppsala University, Sweden: Nursing/Caring Sciences Main activities Research Focus of research Parents, post-traumatic stress Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. “Occurrence and development of posttraumatic stress disorder among Swedish parents of children with cancer”, project leader Prof. Louise von Essen. Start date: 2002- ongoing Key publications (max 5) Pöder U., Ljungman G., von Essen L. Posttraumatic stress disorder among parents of children on cancer treatment: a longitudinal study. Psycho-Oncology. 2008; 17: 430-437 Pöder U., von Essen L. Perceptions of support among Swedish parents of children on cancer treatment: a prospective, longitudinal study. In press: European Journal of Cancer Care Pöder U., Ljungman G., von Essen L. e.g. Parents’ perceptions of their children’s symptoms: a prospective, longitudinal study within pediatric care. Submitted Berglund T., Pöder U., Lorenz S., von Essen L., Haglund K. Experiences of having and caring for a child with cancer. In preparation Norberg AL., Pöder U., von Essen L. Does avoidance predict posttraumatic stress disorder among parents of children with cancer? In preparation

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Last Name Prchal First Name Alice Title Degrees MSc Contact information University Children’s Hospital Steinwiesstrasse 75 CH-8032 Zurich Switzerland Email address [email protected] Profession Psychologist Function Ph.D. student Main activities Both (patient care not with oncology patients) Focus of research Siblings Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Psychological interventions in siblings of pediatric cancer patients (2006-2010) Key publications (max 5)

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Last Name Raadt de First Name Bob Title - Degrees Social Work – VO – Ouderbegeleiding/Interactie Academie Antwerpen Contact information Erasmus MC-Sophia Sk 22.54 Postbus 2060 3000 CB Rotterdam The Netherlands Email address [email protected] Profession Medical social worker Function Social work/ parental coaching Main activities Patient Care/ coaching/ education Focus of research Empowering parents/social work Attending SIOP Berlin 2008 NO Research projects (duration and start date) Key publications (max 5) Raadt, B. de & C. Hoogervorst (2006) – Het recht van ouders op een rechte rug; in: Tijdschrift Ouderschap & Ouderbegeleiding – jaargang 9; maart 2006; nr. 1; pag. 12-18 - Amsterdam: Uitg. SWP. > overgenomen in: Tijdschrift Kinderverpleegkunde, 12e jaargang, nov. 2006, nr. 4; pag. 8-11. Raadt, B. de (2006) – Levensbeschouwing, veerkracht en identiteit. Ouderschap in een medische stroomversnelling. Systeemtheoretische aspecten bij ouderbegeleiding in een academisch kinderziekenhuis. – Rotterdam: Erasmus MC/Dienst Psychosociale Zorg – Medisch Maatschappelijk Werk. Eindwerkstuk voor Interactie-Academie Antwerpen; opleiding ontwikkelingsondersteuning (incl. ouderbegeleiding en opvoedingsondersteuning). ISBN –10: 90-77712-32-1; ISBN-13: 978-90-77712-32-0 > Uitg. Stichting De Vaste Burcht (St. DVB), Alblasserdam. Raadt, B. de, J. Rijkschroeff, M. Speksnijder (2007) – Ouderbegeleiding in het kinderziekenhuis. Thema’s levensbeschouwing en veerkracht; in: Tijdschrift Kinderverpleegkunde, 13e jaargang, juni 2007, nr. 2, pag. 10-11 Streng, Drs. I.C., C. Janse, B. de Raadt (2004) – Kinderen met kanker en hun ouders, in: IKR Bulletin, jaargang 28, dec., pag. 9-13.

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Last Name Reimers First Name Tonny Solveig Title Psychologist Degrees MA. Licensed Psychologist. Specialist in Health-Psychology and in Clinical Child-Neuropsychology. Contact information Rigshospitalet, Copenhagen University Hospital The Juliane Marie Center 9 Blegdamsvej, section 4073 DK-2100 Copenhagen Ø Denmark. Email address [email protected] Profession Psychologist Function Clinical psychologist on the Pediatric Oncology Ward, Rigshospitalet (and researcher as far as possible). Main activities Patient Care (and Research) Focus of research Childhood brain tumors (neurocognitive; quality of life) Attending SIOP Berlin 2008 No. (Maybe if possible). Research projects (duration and start date) 1. Psychosocial and Neuropsychological Late Effects to Radiotherapy and Chemotherapy in Childhood: Cognitive and Social Aspects. (Data collection and evaluations between December 1997 and September 1999. Are still working on the project). 2. In preparation: Social Functioning in Long-Term Survivors of Craniopharyngiomas. Key publications (max 5) Reimers TS, Ehrenfels S, Mortensen EL, et al: Cognitive Deficits in Long-Term Survivors of Childhood Brain Tumors: Identification of Predictive Factors. Med Pediatr Oncol 2003; 40: 26-34. Reimers TS, Mortensen EL, Schmiegelow K. Memory Deficits in Long-Term Survivors of Childhood Brain Tumors May Primarily Reflect General Cognitive Dysfunctions. Pediatr Blood Cancer 2007; 48: 205-212. Reimers TS, Mortensen EL, Nysom K, Schmiegelow K. Health-Related Quality of Life in Long-Term Survivors of Childhood Brain Tumors. Pediatr Blood Cancer 2007; 49, Issue 4, October 1, PL.012.

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Last Name Reinfjell First Name Trude Title Associate prof., Clinical psychologist Degrees PhD Contact information Email address [email protected] Profession Clinical psychologist Function projectleader, supervisor Main activities Research, teaching and clinical practice Focus of research children, adolescents and young adults, quality of life, mental health and neurocognitive functioning Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Quality of life, mental health and cognitive outcome in children in remission from Acute Lymphoblastic Leukaemia. 2009 - 2011 Key publications (max 5) Reinfjell T., Diseth TH., Veenstra M., Vikan A. (2006). Measuring health- related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life inventory (PedsQLTM) 4.0. Health and Quality of Life Outcomes, 4:61 Reinfjell T, Lofstad GE, Veenstra M, Vikan A, Diseth TH (2007). Health-Related Quality of Life and intellectual functioning in children in remission from Acute Lymphoblastic Leukemia. Acta Paediatrica, 96 (9):1280-5. Reinfjell T, Lofstad GE, Nordahl H, Vikan A, Diseth TH. Children in remission from Acute Lymphoblastic Leukemia: Mental health and family functioning. European Journal of Cancer Care. In press. Lofstad GE, Reinfjell T, Hestad K, Diseth TH. Cognitive outcome in children and adolescents treated for acute lymphoblastic leukaemia with chemotherapy only. Acta Paediatrica. In press.

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Last Name Richardson First Name Glenn Title Dr Degrees B.A.; B.A. Hons (Psychology); M.A.; DLitt et Phil (Psychology) Contact information Children’s Oncology Late Effects Pediatric Department Christchurch Hospital Private Bag 4710 Christchurch New Zealand 64 3 364 0640 Ext 88980 Email address [email protected] Profession Clinical Psychologist Function Clinician Main activities Patient Care Focus of research Children & adolescents, parenting, late effects Attending SIOP Berlin 2008 Yes Research projects (duration and start date) Nil Key publications (max 5) Nil

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Last Name Robert First Name Rhonda Title Associate Professor Degrees Ph.D. Contact information Children’s Cancer Hospital, U. T. M. D. Anderson Cancer Center Email address [email protected] Profession Clinical psychology Function Clinical psychology services Main activities Both Focus of research Quality of Life; palliative care; treatment outcome research Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Co-Investigator, Limb Salvage Versus Amputation in Osteosarcoma, funded by Astros’ Long-Term Survivor Fund, Principal Investigator: Winston Huh. 2. Principal Investigator, Psychological Adjustment of the Minor Donor Sibling, funded by the The Bob Tallman Fund. 3. Principal Investigator, Palliative Care and Symptom Management for the Pediatric Oncology Patient, funded by the Children’s Art Project. Key publications (max 5) Robert, R., Meyer, W.J., III, Bishop, S., Rosenberg, L., Murphy, L., Blakeney, P. Disfiguring burn scars and adolescent self-esteem. Burns, 25(7), 581-585, 1999. Robert, R., Blakeney, P., Villarreal, C., Rosenberg, L., & Meyer, III, W. J. Imipramine treatment in pediatric burn patients with symptoms of acute stress disorder: A pilot study. Journal of the American Academy of Child and Adolescent Psychiatry, 38(7), 873-882, 1999. Robert, R., Blakeney, P., Villarreal, C., & Meyer, III, W. J. Anxiety: Current practices in assessment and treatment. Burns, 26(6), 549-552, 2000. Robert, R., Brack, A., Blakeney, P., Villarreal, C., Rosenberg, L., Thomas, C., Meyer, W. J. III. A Double- Blind Study of the Analgesic Efficacy of Oral Transmucosal Fentanyl Citrate and Oral Morphine in Pediatric Patients Undergoing Burn Dressing Change and Tubbing. Journal of Burn Care and Rehabilitation, 24(6), 351-355, 2003. Robert, R., Tcheung, W. J., Rosenberg, L., Rosenberg, M., Mitchell, C., Villarreal, C., Thomas, C., Holzer, C., Meyer, W. J., III. Treating Thermally Injured Children Suffering Symptoms of Acute Stress with Imipramine and Fluoxetine: A Randomized, Double Blind Study. Burns, 2008 (in press).

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Last Name Rossell First Name Nuria Title Bachelor of Arts Degrees Bachelor of Arts Contact information Hospital de Niños Benjamin Bloom. Oncology Department. San Salvador, El Salvador. Central America. Tel/Fax (503) 2226-7313 Email address [email protected] Profession Psychologist Function I’m the Psychologists team coordinator at the multidisciplinary staff of the National Pediatric Oncology Program Main activities Patient Care and Research Focus of research Socio-cultural issues on sickness, treatment, death, family communication etc. Abandonment of treatment. Survivors’ conceptions of normal life. Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Illness thoughts after end of treatment (interviews and group discussions starting at end of 2008) Key publications (max 5) “The National Pediatric Cancer Program and school adaptation of children with cancer in El Salvador.” Flacso. Aportes Magazine No.13. 2001. San Salvador, El Salvador. “Health related quality of life in children with acute lymphoblastic leukemia in El Salvador”. Pediatric Blood and Cancer. Vol.47, Issue 4, page 485. October 1st 2006. “Children with cancer: beliefs among parents in El Salvador concerning nutrition and physical activity during treatment”. Presented at SIOP 2008. “Prevalence and Predictors of Abandonment among Pediatric Oncology Patients in El Salvador, a Low- Income Country”. Presented at SIOP 2008.

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Last Name Sands First Name Stephen Title Pediatric Neuropsychologist Degrees Psy.D. Child Psychology, Neuropsychology Fellowship Contact information Columbia University 161 Fort Washington Ave (IP-7) New York, NY 10032 USA Email address [email protected] Profession Pediatric Neuropsychologist, Child Psychologist Function Main activities Both Patient Care and Research Focus of research Late Effects of Pediatric Cancer, QoL Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Facilitating Parent Adaptation to Pediatric HSCT: The P-SCIP Trial (July 2008-June 2012). 2. Neuropsychological, Social, Emotional, and Behavioral Outcomes in Children with Cancer (September 2008 - ). 3. Hematopoietic Stem Cell Transplant and Quality of Life in Pediatric Recipients for Cancer and Blood Disorders (2002 - current). 4. Neuropsychological and QoL Late Effects from the Treatment of Pediatric Brain Tumors: Head Start III (2006 – present) Key publications (max 5) Sands S, et al. Follow-up of quality of life, neuropsychological and medical functioning of children treated for high-grade gliomas (in preparation). Sands S, et al., Late Effects of Treatment for Pediatric Brain Tumors on the Head Start II protocol (in preparation). Sands S, Giarraffa P, Jacobson C and Axelrod F. Familial Dysautonomia’s impact on quality of life in childhood, adolescence and adulthood. Acta Pediatrica 95: 457-462, 2006. Sands S, Milner J, Goldberg J, Mukhi V, Moliterno J, Maxfield C. and Wisoff J. Quality of Life and behavioral follow-up study of pediatric craniopharyngioma survivors. Journal of Neurosurgery: Pediatrics 103:302-311, 2005. Sands S, Pietanza M, Kellie S, Diez B, Villablanca J, Balmaceda C and Finlay J. Long-term Follow-up of a Chemotherapy-only Regimen for Newly-diagnosed CNS Germ Cell Tumors: The first international cooperative trial. Neuro-Oncology: 174-183, 2001.

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Last Name Savage First Name Amy Title Dr Degrees BSc , D.Clin.Psychol. Contact information Child Psychology Service, Mailpoint 133, Block 8, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD (UK) Email address [email protected] Profession Clinical Psychologist Function Child Clinical Psychologist (Paediatrics) – spend about 20% working for Paediatric Oncology Service Main activities Both although mainly focused on patient care at present due to limited funding of my post Focus of research Interested in therapeutic groups for siblings Attending SIOP Berlin 2008 NO (sadly, limited time for oncology and funding issues) Research projects (duration and start date) Key publications (max 5)

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Last Name Schouten-van Meeteren First Name Antoinette Y.N. Title Dr Degrees MD PhD Contact information Emma Children's Hospital AMC Ped oncology Amsterdam Email address [email protected] Profession Pediatric oncologist Function Main activities Patient care and research both Focus of research Brain tumors eg neurocognitive, palliative care Attending SIOP Berlin 2008 Yes Research projects (duration and start date) in collaboration with the psychosocial unit ! 1. Retinoblastoma psychosocial functioning 2004-2008 (VUMC RB group) 2. White matter imaging and neuropsychological outcome 2006-2008 EKZ 3. Optimize end of life care in pediatric oncology unit from 2007 onwards 4. Neurofeedback in neurocognitive dysfunction in CCS from 2008 Key publications (max 5) Aukema EJ, Caan MWA, Oudhuis N, Majoie, CBLM, Vos FM, Reneman L , Last BF, Grootenhuis MA, Schouten-van Meeteren AYN. White matter fractional anisotropy correlates with speed of processing and motor speed in young childhood cancer survivors. Int J Rad Onc Bio Phys in press van Dijk J, Huisman J, Moll AC, Schouten-van Meeteren AY, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes. 2007 Dec 3;5:65. van Dijk J, Oostrom KJ, Imhof SM, Moll AC, Schouten-van Meeteren AY, Bezemer PD, Huisman J. Behavioural functioning of retinoblastoma survivors. Psychooncology. 2008 Jul 9.

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Last Name Schroeder First Name Hildegard Magdalene Title Degrees Contact information University Hospital, Lübeck Department of Pediatric Oncology and Hematology Ratzeburger Allee 160, D- 23538 Luebeck Tel: + 49 (451) 500- 6235 Email address [email protected] Profession Dipl.-Paed., Family-Psychotherapist Function Psychosocial Service Paediatric Oncology, Teamleader Projectcoordinator and Editor for the development of Guidelines for Psychosocial Care in Pediatric Oncology and Hematology ( PSAPOH/GPOH ) Main activities Patient Care and Research Focus of research Late effects, quality of life, developing concepts of treatment Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. School integration of children and adolescents with Brain Tumors (Publication in 2009) Key publications (max 5) Schröder H.M. Hirntumorerkrankungen im Kindes- und Jugendalter – Eine interdisziplinäre Herausforderung. Abstr.# Monatsschrift Kinderheilkunde 2002 zum Vortrag auf der 60. Halbjahrestagung der GPOH in Berlin am 22.11.2002 Schreiber-Gollwitzer B.M., Schröder H.M., Niethammer D. Psychosoziale Begleitung von Kindern und Jugendlichen mit malignen Erkrankungen, Monatsschrift Kinderheilkunde 2002, 8:150: 954-965 Schreiber-Gollwitzer B.M., Schröder H.M., Griessmeier B., Labouvie H., Lilienthal S. Quantitative und qualitative Erfassung psychosozialer Tätigkeiten in der pädiatrischen Onkologie und Hämatologie – Eine multizentrische Untersuchung im Auftrag der PSAPOH Klinische Pädiatrie 2003, 215: 171-176 Schröder H.M., Lilienthal S., Schreiber-Gollwitzer B.M., Griessmeier B.: Psychosoziale Versorgung in der Pädiatrischen Onkologie und Hämatologie. In: Kurzgefasste interdisziplinäre Leitlinien 2008. Empfehlungen zur Diagnostik und Therapie maligner Erkrankungen. Hrsg.: Deutsche Krebsgesellschaft e.V., Zuckschwerdt-Verlag, München, 203 -220 Schröder H.M., Lilienthal S., Schreiber-Gollwitzer B.M., Griessmeier B.: Leitlinie „Psychosoziale Versorgung in der Pädiatrischen Onkologie und Hämatologie“, AWMF Stufe 3. www.uni-duesseldorf.de/AWMF/ll/ll/025.htm

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Last Name Schuitema First Name Ilse Title Degrees M.Sc. Contact information +31629058118 Email address [email protected] Profession neuropsychologist Function PhD student Main activities Research Focus of research late effects (> 20 years), neurocognitive, quality of life Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Neurotoxicity of cancer treatment: neurocognitive dysfunction and underlying mechanisms (2007- 2011) Key publications (max 5)

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Last Name Schulte First Name Fiona Title Ms. Degrees BAH, MA Contact information Department of Psychology, SickKids Email address [email protected] Profession Student in Health and Behavioral Science Function Ph.D. Candidate Main activities Research Focus of research Child and Adolescent Cancer Survivors; Social Development; Quality of Life; Interventions Attending SIOP Berlin 2008 YES Research projects (duration and start date) 1. A Group Social Skills Intervention for Survivors of Brain Tumors Key publications (max 5) Barrera, M, Schulte, F, & Spiegler, B. (2008). Factors influencing depressive symptoms of children treated for a brain tumor. Journal of Psycho-Oncology, 26, 1-16. : Barrera, M. & Schulte, F. A group social skills intervention program for survivors of childhood brain tumors. Journal of Pediatric Psychology (submitted) Schulte, F. & Barrera, M. Behavioral Outcomes and Associated Factors from an Intervention Program for Survivors of Childhood Brain Tumours. Presented at the International Symposium for Pediatric Neuro-Oncology, Chicago, Illinois, June, 2008. Conference Abstract Schulte, F. & Barrera, M. Quality of Life Outcomes from an Intervention Program for Survivors of Childhood Brain Tumours. Presented at the Canadian Association of Psychosocial Oncology Annual Conference, Halifax, May, 2008. Schulte, F. & Barrera, M. Body Mass Index, Behavior Problems and Social Skills in Survivors of Childhood Brain Tumors. In Preparation

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Last Name Schwartz First Name Lisa Title Psychologist Degrees PhD Contact information The Children's Hospital of Philadelphia 34th and Civic Center Blvd CHOP North #1487 Philadelphia, PA 19103 267-426-0355 Email address [email protected] Profession Psychologist Function Psychologist for Cancer Survivorship Program, Research Main activities Mostly research with some clinical care Focus of research Quality of life, health promotion, and transition to adult care for adolescents and young adults with chronic illness (focus is on oncology, with some work in sickle cell disease) Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. The Adverse Effect of Health on Personal Goal Pursuit of Adolescents with Cancer (NIH R03 CA126337). 9/18/06-8/31/08, PI: Lisa A. Schwartz, Ph.D. 2. Predictors of Attendance at Follow-Up Appointments of Young Adult Cancer Survivors. Aflac Young Investigator Award in Adolescent/Young Adult Oncology (Through National Childhood Cancer Foundation). 2/29/08-2/28/10, PI: Lisa A. Schwartz, Ph.D. 3. Psychological Outcome in Childhood Cancer Survivors (NIH RO1 CA 106928), 8/1/04-7/30/09, PI: Anne Kazak, Ph.D., ABPP, Role: Co-Investigator. Key publications (max 5) Schwartz, L.A., & Drotar, D. (under review). Health-related hindrance of personal goal pursuit and well- being of young adults with cystic fibrosis, pediatric cancer survivors, and physically healthy peers. Schwartz, L. A., Radcliffe, J., & Barakat, L. P. (2007). The development of a culturally sensitive pediatric pain management intervention for African-American adolescents with sickle cell disease. Children’s Health Care, 36, 267-284. Rourke, M. T., Hobbie, W. L., Schwartz, L. A., & Kazak, A. E. (2007). Posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer. Pediatric Blood and Cancer, 49. 177-182. Schwartz, L., & Drotar, D. (2006). Posttraumatic stress and related impairment in survivors of childhood cancer in early adulthood compared to healthy peers. Journal of Pediatric Psychology, 31, 356-366. Schwartz, L., & Drotar, D. (2004). The effects of written emotional disclosure on caregivers of children and adolescents with chronic illness. Journal of Pediatric Psychology, 29, 105-118.

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Last Name Selove First Name Rebecca Title Clinical Psychologist, Assistant Professor Degrees Ph.D., M.P.H. Contact information Children’s National Medical Center, Washington, DC; 202-476-2243 Email address [email protected] Profession Clinical Psychology Function Clinical services for oncology & hematology pediatric patients & families, clinical supervision for psychologists-in-training, teaching and consultation with medical and nursing staff, involvement in DC area advocacy for our patients Main activities Patient Care; Research, Advocacy, Teaching Focus of research Improving systems of care for pediatric cancer survivors & their families Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Family-centered palliative care improvement project. Specific aim: To obtain information from bereaved parents for improving family-centered care for seriously ill children, Oct. 2006 – Dec. 2006 2. Psychosocial services offered during the first 30 days after diagnosis: A web-based survey of COG institutions, Oct. 2007 – Oct. 2009 3. Assessing educational resources and support for pediatric cancer survivors in the District of Columbia, Sept. 2008-Aug. 2009 Key publications (max 5) Selove, R. (2007 October). Psychosocial services in the first 30 days: A survey of Childrens’ Oncology Group institutions. Presented at the COG Annual Meeting, Denver, CO. Selove, R. (2008). Family-centered palliative care improvement project: Recommendations from bereaved parents. Poster presentation at the American Psychological Association Annual Meeting, Boston, MA.

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Last Name Segovia First Name Leanne Title Assistant Professor Degrees PhD Contact information UTHSCSA Pediatric Hematology/Oncology 333 N. Santa Rosa St. – 8th floor San Antonio, TX 78207 Email address [email protected] Profession Psychologist Function Health care provider Main activities Both (patient care and research) Focus of research Adolescents and young adults; cognitive late effects Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Study Chair of Children’s Oncology Group protocol entitled Neuropsychological, Social, Emotional, and Behavioral Outcomes in Children with Cancer (scheduled to open within COG on 9/15/08) 2. Ongoing study entitled The Impact of Cancer for Older Adolescents and Young Adults: Measuring Outcomes and Enhancing Care Key publications (max 5)

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Last Name Sharma First Name Shantanu Title Dr. Assistant professor Degrees Md radiation oncology Contact information 51 shri rampura colony civil lines Jaipur India Email address [email protected] Profession Assistant professor,sms medical college and attached hospitals jaipur,india Function Patient care, post graduate teaching, research Main activities Patient care and research Focus of research Quality of life ,pain management and palliative care Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Proceding for uicc, icrett felowship md anderson hospital on pain management and palliative care Key publications (max 5)

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Last Name Sharp First Name Lisa Title Assistant Professor Degrees BSN, MA, PhD Contact information Email address [email protected] Profession Clinical health psychologist Function Main activities Research Focus of research Childhood cancer survivors: follow-up, psychosocial adj, dr-pt comm. Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. Childhood Cancer Survivors’ Program to Empower Action in Care funded by NCI starts 6/01/2008 Key publications (max 5) Kinahan KE, Sharp LK, Arnston P, Galvin K, Grill L, Didwania A. Adult Survivors of Childhood Cancer and their Parents: Experiences with Survivorship and Long-Term Follow-Up. In Press. Journal of Pediatric Hematology and Oncology. Sharp LK, Kinahan KE, Didwania A, Stolley M. Quality of life in adults survivors of childhood cancer. Journal of Pediatric Oncology Nursing. 2007;24:220-226.

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Last Name Sidhu First Name Ranita Title Ms Degrees BSc OT, MSc OT Contact information Child and Adolescent Oncology Total Care Unit Princess Margaret Hospital Subiaco Perth Western Australia 6008 Email address [email protected] Profession Occupational Therapist Function Clinician, Supervisor, Manager Main activities Patient Care; Research, Both Focus of research Siblings of Children with Cancer, Bereavement Attending SIOP Berlin 2008 Trying to! Sorry unable to come this year but please let me know of next years program. Research projects (duration and start date) 1. Chief Investigator-Developing and evaluating a peer support camp program for siblings of children with cancer [completed in 2005] Manual and Publications available. 2. Co-researcher-The experiences and psychosocial needs of young children who have a mother living with cancer- a qualitative study [2008-current] 3. Pain Research Special Interest Group- Point Prevalence study [2007-current] 4. Psychosocial Oncology Research Group- Proposed Trial of “Comfort First” Program at PMH 2008? Key publications (max 5) Sidhu, R.J., Passmore, A. and Baker, D. (2005) Pediatric Blood and Cancer. The effectiveness of a Peer Support Camp for siblings of children with Cancer. Sidhu, R.J., Passmore, A. and Baker, D, Journal of Pediatric Oncology Nursing (2005) An Investigation into Parent Perceptions of the needs of siblings of children with cancer. Sidhu,R.J., Passmore, A. and Baker, D (In Press) British Journal of Occupational Therapy. De Cinque,N., Monterosso,L. Dadd, G., Sidhu, R. Macpherson, R., and Aoun, S. (2006) Bereavement Support for Families following the death of a child from cancer. Experience of Bereaved Parents. Journal of Pyschosocial Oncology. 24,2 De Cinque, N., Monterosso, L. Dadd, G., Sidhu, R. Macpherson, R., and Aoun, S. Bereavement Support for Families following the death of a child from cancer. Report from a Survey of Australian and New Zealand Pediatric Oncology Units

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Last Name Stamm First Name Walther D. Title Degrees Dipl.-Psych. Contact information Klinik für Kinder und Jugendliche Stenglinstr. 2 86156 Augsburg Germany +49/821/400-3403 Email address [email protected] Profession Psychologist Function Director of the pediatric psycho-social service Main activities Patient Care Focus of research Attending SIOP Berlin 2008 NO Research projects (duration and start date) Key publications (max 5)

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Last Name Streng First Name Isabelle Title Chartered Clinical Psychologist Degrees Drs Contact information Erasmus MC-Sophia Rotterdam The Netherlands Email address [email protected] Profession Clinical Psychologist Function Clinical Psychologist Pediatric Oncology Main activities Patient Care Focus of research Attending SIOP Berlin 2008 NO maybe Research projects (duration and start date) Key publications (max 5)

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Last Name Reinhard J. First Name Topf Title Dr. phil Degrees Contact information St. Anna-Kinderspital, , Kinderspitalgasse 6 A-1090 Vienna Email address [email protected] Profession Psychologist, psychotherapist Function Head of the psychosocial group, chief psychologist und psychotherapist Main activities Patient Care, Research Focus of research Quality of life research, psychosocial problems of parents and children, neurocognitive, late effects Attending SIOP Berlin 2008 no Research projects (duration and start date) 1. Health care status of viennese children, start time in autumn 2009 2. Gen-Au-Child3: Subprojet - Information needs of paediatric cancer patients and their parents in the light of increasing. Planing status Key publications (max 5) Glucocorticoids in theTreatment of Children with Acute Lymphoblastic Leukemia and Hodgkin's Disease: A Pilot Study on theAdverse Psychological Reactions and PossibleAssociations with Neurobiological, Endocrine, and GeneticMarkers. Rosemarie Felder-Puig,Christiane Scherzer,Michaela Baumgartner, Magdalena Ortner, Claudia Aschenbrenner, Christian Bieglmayer, Till Voigtlander, E. Renate Panzer-Grumayer, WimJ.E. Tissing, JanW. Koper, Karl Steinberger, Christian Nasel, Helmut Gadner, Reinhard Topf, Michael Dworzak. Clinical Cancer Research; 13: 7093-7100, 2007. Topf, R.: Medizinische Krebsaufklärung als psychosoziale Notwendigkeit - Tiefenpsychologische Aspekte in der medizinischen Behandlung krebskranker Kinder. Kinderanalyse 5/3, 285-311, 199 Topf, R.; Trimmel, J.; Vachalek, L.; Felsberger, C.; Gadner, H. Das Psychosoziale Betreuungskonzept der pädiatrischen Onkologie des St. Anna-Kinderspitals, Wien. Nachdruck. Psychologie in Österreich, 19/2/1999, 89-100. Topf, R., Bergsträßer, E.: Palliative Betreuung und Behandlung. IN: Pädiatrische Hämatologie und Onkologie. 1112-1123. 2006. Springer-Verlag. Heidelberg Topf, R.: Die Mutter als Leibärztin: Das Kind, die Krankheit und der Tod. Beitrag angenommen in der Zeitschrift "PSYCHE", geplante Erscheinung Frühjahr 2009.

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Last Name Vanegas First Name Teresa Title Hematooncology Unit Chief Degrees Pediatric Oncology Contact information Unidad Hematooncologia Pediatrica. Hospital Universitario Dr. Angel Larralde Telf. 0058 241 7110439 0058.416-6410227 Email address [email protected] – [email protected] Profession MD Pediatric Oncology Function Hematooncology Unit Chief Main activities Patient Care; Research, Both Focus of research family functioning, late effects Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. family functioning enero 07- diciembre 09, 2. late effects: Bone Densimetry post treatment start January 06 - January 09 Key publications (max 5) Surveillance of the pediatrician of the effects late of the treatment in the children's with Cancer. LIV National Congress of Pediatrics. September 2, 2008 Program of Psycho pedagogical Attention the children's and teenagers with cancer and its Familiar: Integrated Congress of Oncology, Mastology and Radiotherapy. Isla Margarita 13 to the 16 October 2004 Pain in the Pediatric oncology patient. II Meeting Regional Dra. Lady Casanova de Escalona". Valencia 30-31 May and 01 June 2002 Chemotherapy and its Effects Collaterals. Concepts-Complications. Educational coordination of Nursery of the Hospital College student Julio 21 1995. Education and Updating workshop in Pediatric Oncology workshop to Health Care. Employee from Dr. Angel Larralde University Hospital. Valencia, 17/07/96 - 21/07

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Last Name Vercruysse First Name Gertrui (nickname: Trui) Title Mrs. Degrees master in clinical child psychology Contact information UZ Leuven Herestraat 49 3000 Leuven Belgium Email address [email protected] Profession clinical psychologist Function clinical psychologist Main activities Patient Care and Research Focus of research long term follow-up (neuropsychological/ QOL), siblings Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Member of the ISPACc study group: long term neuropsychological follow-up of children with leukemia, international project, project in the phase of writing the final article, data are gathered and analysed. 2. Quality of life of siblings of severe and chronic ill children (cystic fibrosis/ diabetes/ heart disease/ cancer), joint project of the clinical psychologists working on the pediatric units in UZLeuven, started two years ago with the cystic fibrosis group, since the beginning of 2008 the other groups are included. Project in the phase of gathering the data. 3. Participating in the E 2020-333 & 334 study of EISAI and Quintiles: clinical study of a new drug for children with cognitive deficits attributed to the cancer or cancer treatment. The study is a combination of a medical and neuropsychological investigation, in the phase of pre-screening the eligible children. 4. Participating in Euramos I, trial van de European and American osteosarcoma study group, overall survival en toxicity, QOL. Key publications (max 5) Vercruysse, T., Schoubben, E., Govaerts, L., Renard, M., Uyttebroeck, A. (2006). Reintegration in school after treatment for cancer. Pediatric Blood and Cancer, 47, 4, 490. Mennes, M., Stiers, P., Vandenbussche, E., Vercruysse, G., Uyttebroeck, A., De Meyer, G., Van Gool, SW. (2005).Attention and information processing in survivors of childhood acute lymphoblastic leukaemia treated with chemotherapy only. Pediatric Blood and Cancer, 44, 479-486. Bijttebier, P., Vercruysse, T., Vertommen, H., Van Gool, S., Uyttebroeck, A., & Brock, P. (2001). New evidence on the reliability and validity of the Pediatric Oncology Quality of Life Scale. Psychology and Health, 16, 461-469. Acke-Havermans, L., Gerard, F., Theunis, M., Vander Marcke, M., Vercruysse, T., Witvrouw, J. (1994). De psychosociale begeleiding van kinderen met kanker in België. Brussel: Vereniging voor kankerbestrijding. Vercruysse,T. (1994). Het effect van de leukemiebehandeling op de cognitieve functies bij kinderen. In Acke-Havermans, L., Gerard, F., Theunis, M., Vander Marcke, M., Vercruysse, T., Witvrouw, J. De psychosociale begeleiding van kinderen met kanker in België. Brussel: Vereniging voor kankerbestrijding.

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Last Name Vrijmoet-Wiersma First Name Jantien (C.M.J.) Title MSc Degrees Developmental Psychology Contact information Leiden University Medical Center Pediatric Department, J6-174 PO Box 9600 2300 RC Leiden The Netherlands +31 715262494 Email address [email protected] Profession Child Psychologist Function Child Psychologist at the Cancer Ward, Bone Marrow Transplantation Unit and Neonatology Follow-up Care Main activities Both patient care and research Focus of research Parental stress in pediatric cancer and SCT, HRQoL of children with cancer, children with LCH and children undergoing SCT. Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Jan 2006-now: Pediatric SCT: HRQoL and parental stress, a follow up study. 2. Jan 2008-Aug 2008: Parental stress in parents of children with congenital heart disease. 3. Jan 2008-Aug 2008: Follow-up study of children having undergone SCT, 5 and 10 years ago, and their parents. 4. Oct-2008- HRQoL of pediatric patients with GVDH receiving MSC’s, international study with three other medical centers in Italy and Sweden. 5. Jan 2009: Intervention study involving parents of pediatric SCT patients. Key publications (max 5) Vrijmoet-Wiersma, C. M. J., van Klink, J. M. M., Kolk, A. M., Koopman, H. M., Ball, L. M., & Egeler, R. M. (2008). Assessment of parental stress in pediatric cancer: a review. Journal of Pediatric Psychology, aug,(33) 694-706. Vrijmoet-Wiersma, C.M.J., Kooloos V.M., Koopman, H.M., Kolk A.M., van der Laan, I., Grootenhuis, M.A., Egeler, R.M. (2008). Health-related quality of life, cognitive functioning and behaviour problems in children with Langerhans cell hystiocytosis. Pediatric Blood and Cancer (in press). Vrijmoet-Wiersma, C.M.J., Hoekstra-Weebers, J.E.H.M., de Peinder W.M.G, Koopman, H.M., Tissing, W.J.E., Treffers, Ph.D.A., Bierings, M.B., Jansen, N.C.A., Grootenhuis, M.A., Egeler, R.M. Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study. (Submitted to Psychooncology)

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Last Name Wish First Name Joel Title Director of Health Psychology Degrees PhD Contact information Univ. of Wisconsin Hospital, Room E3/252 600 Highland Ave Madison WI 53792 USA Email address [email protected] Profession Psychologist Function Main activities Patient care, administration Focus of research Attending SIOP Berlin 2008 No Research projects (duration and start date) Key publications (max 5)

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Last Name Walker First Name David A Title Professor Degrees B Med Sci BM BS FRCP FRCPCH Contact information Child Health QMC Nottingham NG72UH United Kingdom Email address [email protected] Profession Paed Neuro-Oncologist Function Main activities Both Focus of research Neuro-oncology, TYA trials access Attending SIOP Berlin 2008 Yes/NO uncertain at present Research projects (duration and start date) 1. Biobank Low Grade Glioma 2007-2011 2. Low grade Glioma trial 2006-2010 3. Barretstown evaluation programme 2007-8 4. Pathways ot CNS tumour diagnosis 2005-8 Key publications (max 5)

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Last Name Wenninger First Name Kerstin Title Dr. Degrees PhD in Psychology, University of Göttingen, Germany Contact information Universitätsklinikum Freiburg Zentrum für Kinder- und Jugendmedizin Onkologisch-hämatologische Ambulanz Mathildenstr. 1 79106 Freiburg Germany Email address [email protected] Profession Psychologist Function Psychosocial services, oncol.-haematol. Outpatient clinic Main activities Patient care; some research Focus of research Young adults, psychosocial adaptation, coping Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Vocational and psychosocial adjustment after childhood cancer – the role of coping (in preparation) Key publications (max 5): Focus of previous research: Psychosocial adjustment of patients with a chronic illness/development of assessment instruments Augustin, M., Wenninger, K., Amon, U., Schroth, M. J., Kuster, W., Chren, M., Kupfer, J. & Gieler, U. (2004). German adaptation of the Skindex-29 questionnaire on quality of life in dermatology: validation and clinical results. Dermatology, 209, 14-20. Augustin, M., Lange, S., Wenninger, K., Seidenglanz, K., Amon, U. & Zschocke, I. (2004). Validation of a comprehensive Freiburger Life Quality Assessment (FLQA) core questionnaire and development of a threshhold system. European Journal of Dermatology, 14, 107-113. Wenninger, K., Weiss, C., Wahn, U. & Staab, D. (2003). Body image in cystic fibrosis - development of a brief diagnostic scale. Journal of Behavioral Medicine, 26, 81-94. Wenninger, K., Aussage, P., Wahn, U., Staab, D. & die Deutsche CFQ-Arbeitsgruppe (2003). The revised German Cystic Fibrosis Questionnaire: Validation of a disease-specific health-related quality of life instrument. Quality of Life Research, 12, 77-85. Staab, D., Wenninger, K., Gebert, N., Rupprath, K., Bisson, S., Trettin, M., Paul, K.D., Keller, K.M. & Wahn, U. (1998). Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity? Thorax, 53, 727-731.

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Last Name Wicks First Name Lynley Anne Title Degrees MSc / PGDipClinPsyc Contact information Pediatric Department Wellington Hospital Wellington New Zealand Email address [email protected] Profession Clinical Psychologist Function Clinician working with children and adolescents with cancer and Researcher Main activities Both Focus of research Adolescents, quality of life, late effects Attending SIOP Berlin 2008 NO Research projects (duration and start date) 1. The Adolescent Cancer Experience – ongoing since June 2006 Key publications (max 5) 2 publications submitted

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Last Name Wiener First Name Andreas Title Degrees Dipl.-Psych. Contact information University Hospital of Münster Pediatric and Adolescent Medicine – Pediatric Hematology and Oncology QoL-Trial Office 48129 Münster phone: +49 251 83-52424 fax: +49 251 83-57874 Email address [email protected] Profession Psychologist Function - Study coordinator of GPOH QoL working group - Attending psychologist (BM transplant. & BT patients) Main activities Both Focus of research - Neurocognitive late effects - QoL Attending SIOP Berlin 2008 Yes Research projects (duration and start date) 1. Health related quality of life (QoL) and late effects in children and adolescents treated for ALL or brain tumour; 2000-2008 (BMBF funded) 2. Investigations of QoL within the EURAMOS 1 trial of the European and American Osteosarcoma Study Group; 2005-2009 (partly funded by DFG) 3. QoL evaluation within the GPOH (SIOP) treatment optimisation protocol CRANIOPHARYNGIOMA 2007; 2007-ongoing 4. QoL evaluation within the GPOH (SIOP) treatment optimisation protocol for high grade gliomas, diffuse intrinsic pontine glioma, and gliomatosis cerebri; in preparation 5. QoL evaluation within the SIOP treatment optimisation protocol for CNS GCT; in preparation Key publications (max 5) Ottensmeier, H., Wiener, A., Calaminus, G., Rutkowski, S. (2008). Cattell-Horn-Carroll (CHC) Theory based neuropsychological-basic-diagnostics for pediatric brain tumour patients: a common assessment within trials of the German HIT-BT network. Poster SIOP Berlin Oct. 2008. Calaminus G, Neubauer M, Weinspach S, Wiener A, Beck JD. Defining a tool to access the neuropsychological profile (NP) and quality of life (QoL) in children with brain tumours: Analysis of the German BMBF-project on late effects and QoL in pediatric oncology. International Symposium & Annual. 1st meeting of the Neuro-Oncology working group (NOA) of the German Cancer Society, Düsseldorf, 16. – 17.09. 2004. J Neuro-Oncol 2004 70:100 Calaminus G, Neubauer M, Teske C, Wiener A, Ittner E, Langer T, Beck JD. Prospective Evaluation of late effects and Quality of Life (QoL) in ALL and brain tumours in Germany. SIOP Porto, 18. – 21.09.2002. Med Pediat Oncolol 2002 39:4 P271.

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Last Name Wijnberg-Williams First Name Barbara Title Degrees MSc Contact information Wenckebach Institute, University Medical Center Groningen, PO Box 30 001, 9700 RB Groningen, the Netherlands Email address [email protected] Profession Psychologist Function Psychologist Main activities Both Focus of research Quality of life, short and long term adaptation, family functioning, ptss, children, parents, interventions Attending SIOP Berlin 2008 No Research projects (duration and start date) 1. Long-term parent’s adjustment to pediatric cancer; end date: 2010 Key publications (max 5) Wijnberg-Williams, B.J., Klip, E.C., Kamps, W.A., Hoekstra-Weebers, J.E.H.M. (2006). Psychological adjustment of parents of pediatric cancer patients revisited: five years later. Psycho-Oncology, 15, 1-8. Wijnberg-Williams, B.J., Kamps, W.A., Klip, E.C., Hoekstra-Weebers, J.E.H.M. (2006). Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: long-term prospective results. Journal of Pediatric Psychology, 31, 785-792.

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Last Name Young First Name Bridget Title Dr Degrees BA PhD Contact information Division of Clinical Psychology, School of Population Community and Behavioural Sciences, University of Liverpool, Whelan Building, Brownlow Hill, Liverpool, L69 3GB UK 0151 794 5525 (Direct); 0151 794 5485 (Secretary) Email address [email protected] Profession Psychologist Function Project leader Main activities Research Focus of research Parents and children Attending SIOP Berlin 2008 Yes/NO Research projects (duration and start date) 1. Investigators: Young B, Hill JW, Eden T, Salmon P. Title: Relationships between parents and practitioners regarding children with leukaemia: the Rapport study (October 2006 for 34 months) Funding: CRUK 2. Investigators: Fisher P, Young B, Salmon P, Eden T. Title: Alleviating emotional distress in adolescent survivors of cancer (January 2009 for 18 months). Funding: CLIC Sargent, Key publications (max 5) Salmon P, Young B. (2005) Core assumptions and research opportunities in clinical communication. Patient Education and Counselling. 58, 225-234. Dixon-Woods M, Young B, Heney D. (2005) Rethinking Experiences of Childhood Cancer. Milton Keynes: Open University Press. Young B, Dixon-Woods M, Windridge K, Heney D. (2003) Managing communication with young people who have a potentially life-threatening chronic illness: qualitative study of patients and parents. British Medical Journal 326, 305-8. Young B, Dixon-Woods M, Findlay M, Heney, D. (2002) Parenting in a crisis: conceptualising mothers of children with cancer. Social Science and Medicine, 55, 1835-1847. Dixon-Woods M, Findlay M, Young B, Cox H, Heney D. (2001). Parents’ accounts of obtaining a diagnosis of childhood cancer. The Lancet, 357, 670-674.

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Last Name Zebrack First Name Brad Title Associate Professor Degrees PhD, MSW, MPH Contact information University of Michigan School of Social Work 1080 S. University, Room 2778 Ann Arbor Michigan 48109-1106 USA Email address [email protected] Profession University Professor Function Research, Teaching, Service Main activities Research Focus of research Quality of Life Attending SIOP Berlin 2008 Unfortunately No Research projects (duration and start date) 1. Quality of Life in Young Adult Survivors of Childhood Cancer, 5 years, 2003-2008 2. The impact of cancer for older adolescents and young adults: measuring outcomes and enhancing care 3. “The Impact of Cancer for Older Adolescents and Young Adults: Measuring Outcomes and Enhancing Care,” HopeLab, Palo Alto, CA, 2007-2010 4. “Quality of life assessment in childhood cancer survivors,” US Department of Health and Human Services, National Institutes of Health, National Cancer Institute (5K07CA100380), 2003-2009 5. “Families of Childhood Cancer Survivors,” US Department of Health and Human Services, National Institutes of Health, National Cancer Institute (R03CA113145-01A1), 2005-2007 Key publications (max 5) Zebrack, B.J. (2008). Information and service needs for young adult cancer survivors, Supportive Care in Cancer, DOI 10.1007/s00520-008-0469-2. Zebrack, B.J. (2008). Information and service needs for young adult cancer patients, Supportive Care in Cancer, DOI 10.1007/s00520-008-0435-z. Zebrack, B.J., Zevon, M.A., Turk, N., Nagarajan, R., Whitton, J., Robison, L.L., & Zeltzer, L.K. (2007). Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A report from the Childhood Cancer Survivor Study. Pediatric Blood and Cancer, 49, (1), 47-51. Zebrack, B., Oeffinger, K., Hou, P., & Kaplan, S. (2006). Advocacy skills training for young adult cancer survivors: The Young Adult Survivors Conference (YASC) at Camp Māk-a-Dream. Supportive Care in Cancer, 14, 779-782. Zebrack, B. & Chesler, M. (2005). To achieve (e)quality health care for childhood cancer survivors. Cancer, 104(12), 2647-2649.

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