Local Organizing Committee Center of Adolescent Medicine

Local organizing committee Center of Adolescent Medicine

Scientific committee Russell Viner (UK) Janet McDonagh (UK) Artemis K. Tsitsika (Greece) Valentina Baltag, (WHO) Ylva Tindberg (Sweden) Helena Fonseca (Portugal) Joan Carles Suris (Switzerland) Charlotte Blix (DK) Kirsten Boisen (DK) Grete Teilmann (DK)

Layout and graphics Karina Nekes Suhr Printed by www.printexpress.dk

Center of Adolescent Medicine

1 TABLE OF CONTENTS

WELCOME

PROGRAMME

SPEAKERS´ ABSTRACTS MONDAY

SPEAKERS´ ABSTRACTS TUESDAY

POSTER ABSTRACTS

SPEAKERS AND PARTICIPANTS

VENUE AND PRACTICAL INFORMATION

2 3 Welcome

It is our great pleasure to welcome you to We thank our sponsors Novo Nordisk, Sanofi the 16th European annual IAAH meeting in Aventis, The Danish Heart Foundation, The Copenhagen. Danish Cancer Society, and The Danish Rheu- matism Association for their financial support. The scientific committee has prepared a We are grateful to the Copenhagen University diverse and interesting programme within Hospital, Rigshospitalet for hosting the event, the theme: Engaging adolescents and young and for its daily support in improving condi- people in health. tions for young patients.

The programme includes exciting sessions on We wish to thank the scientific committee for young peoples´ participation in health care, their work with the programme and reviewing research, and staff training, as well as their in- the submitted abstracts and our colleagues volvement in transition and self-management. for chairing the sessions and workshops. Furthermore, we will discuss the treatment of obesity in adolescence, how to talk about Last but not least, a special and warm-hearted sexuality, stress in puberty, youth friendly thanks to the young people who daily inspire health policies and interventions in adoles- us to do our best in the continuing develop- cent health. ment of this important area.

Moreover, we have received 41 fascinating We wish you a rewarding conference and a abstracts, which will be presented in oral ses- good time in Copenhagen. sions and on posters. Please use the lunch and coffee breaks to watch and discuss the many On behalf of the local organizers, inspirational posters in front of the auditori- ums. Grete Teilmann, Kirsten Boisen & Charlotte Blix

We hope that the meeting will give you the opportunity to network and meet old and new experts in the field of adolescent medicine. WELCOME

WELCOME 4 PROGRAMME MONDAY

8:00- 9:00 Registration

9:00- 9:30 Welcome uAud 1 Charlotte Blix, Center of Adolescent Medicine, Denmark Lise Müller, Member of the Regional Council, Denmark Russell Viner, European Vice-President, IAAH 9:30-10:15 Not just a phase – engaging young people in health care uAud 1 Damian Wood Nottingham Children’s Hospital, NHS Trust, UK Chair: Kirsten Boisen 10:15-10:45 Coffee 10:45-12:15 Parallel workshops: 1) Involving young people in staff training uAud 1 Anne Meynard Département de l’enfant et de l’adolescent et Département de médecine communautaire, HUG, Genève Chair: Janet McDonagh

2) Adolescent health: from monitoring to intervention uAud 2 Pernille Due & Bjørn Holstein National Institute of Public Health & HBSC, Denmark Chair: Grete Teilmann 12:15-13:00 Lunch 13:00-14:30 Parallel workshops: 1) Let´s talk about sex uAud 1 Heleen van der Stege / Tinne Laursen og Lotte Ørneborg Rodkjær / Christian Graugaard Rotterdam University - Expertise Center Transitions of Care, the Netherlands The group of young HIV positives, Denmark, The Danish Family Planning Association Chair: Christian Graugaard 2) Participation – making it work for everybody uAud 2 Rebecca Sands & Fiona Straw / Pierre-André Michaud Sherwood Forest Hospitals NHS Trust & Nottingham University Hospitals NHS Trust, UK Unité multidisciplinaire de santé des adolescents, CHUV, Switzerland Chair: Russell Viner

5 PROGRAMME 14:30-15:00 Coffee 15:00-16:00 Parallel oral sessions: Aud 1: Chair: Janet McDonagh 1) ON WARD: A mobile phone application for diabetes self-management and transition Sandy Whitehouse, Ellen Balka, Jennifer Greenhorn, Mary Paone, Nireesha Prakash 2) Parents of adolescents and young adults with severe motor and intellectual disability - experiences with (the preparation for) the transfer to adult care G.C.B. Bindels-de Heus, A.L. van Staa, I. van Vliet, F. Ewals, S.R. Hilberink

3) Transition from child to adult care: What are the perceptions held by adolescents, parents and providers? H. M. Sonneveld, M. M. H. Strating, A. L. Van Staa, M. Roebroeck, A. P. Nieboer Aud 2: Chair: JC Suris 1) Enhancing effective communication: distribution of and associations with Q-Care Profiles in adolescents with chronic conditions Susan Jedeloo, AnneLoes van Staa, On Your Own Feet Research Group 2) Engaging and involving teenagers in cancer service development; An exemplary model Sam Smith & Lorraine Case 3) Validation of a questionnaire to assess the youth-friendliness of primary care services for research purposes. DM Haller, A Meynard, D Pejic, A Sredic, D Courvoisier, N Perone, LA Sanci, F Narring. 4) Youth-friendly health clinics in Russia: team building approach Karina Vartanova 16:00-17:00 Meet the experts uAud 1 Adolescent advisory board Center of Adolescent Medicine, Copenhagen Chair: Kirsten Boisen & Grete Teilmann

PROGRAMME 6 PROGRAMME TUESDAY

9:00- 9:45 Stress in puberty and adolescence uAud 1 George P. Chrousos Centre for Health and Prevention in Adolescence, University of Athens, Children’s Hospital Aghia Sophia, Athens, Greece. Chair: Kristina Berg-Kelly 9:45-10:15 Coffee 10:15-11:45 Parallel workshops: 1) Involving young people with chronic conditions in their own healthcare uAud 1 Janet McDonagh & Marie McGee University of Birmingham and Birmingham Children’s Hospital Foundation Trust, UK Chair: Deborah Christie 2) Obesity treatment in adolescence uAud 2 Helena Fonseca and Jens Christian Holm Adolescent Outpatient Clinic, Hospital de Santa Maria, Lisboa, Portugal The Children’s Obesity Clinic, Holbæk University Hospital, Denmark. Chair: Artemis Tsitsika 11:45-12:30 On your own feet ahead - participation in transition uAud 1 AnneLoes van Staa Rotterdam University - Expertise Center Transitions of Care & Erasmus University Rotterdam - Institute of Health Policy & Management, the Netherlands Chair: Russell Viner 12:30-13:15 Lunch 13:15-14:00 Young peoples´ health as whole-of-society response. Evidences for gender responsive actionsuAud 1 Valentina Baltag WHO Regional Office for Europe Chair: JC Suris 14:00-15:00 Parallel oral sessions: Aud 1: Chair: Kirsten Boisen 1) Sexual behavior profiles: Dutch HIV positive youths´ preferences about sexuality Susan Jedeloo, Linda van der Knaap

7 PROGRAMME 2) Addictive internet behaviors (internet addiction) among Greek adolescents: association with high risk internet behaviors and psychosocial development A.Tsitsika, E. Critselis, G. Kormas, V. Dimitrakopoulou, D. Bikouli, K. Athanasiou, M. Janikian, E. Tzavela, G. Antonogeorgos, G. Kavvadias, D. Kafetzis 3) Changes between substance use groups in the trajectory between adolescence and young adulthood JC Suris, A Berchtold, C Akre, M Wilson, A Mialon 4) Why young children die? Onno L.Sijperda, Liesbeth Oonk, Ad Kerkhof, Magda Boere-Boonekamp Aud 2: Chair: Grete Teilmann Tree of Life project for young people with diabetes Lucy Casdagli, Glenda Fredman and Deborah Christie Screening for adolescent vulnerability in the emergency department: A missed opportunity Eleftheria Konstantoulaki, Rebecca Goldschmidt, Sophie Khadr, Rebecca Salter, Ian Maconochie, Andrea Goddard An innovative electronic screening tool for adolescents with chronic conditions Sandy Whitehouse, Ellen Balka, Mary Paone, Shelagh McLennan

“The amount of sugar in my blood over the last 3 months that has sort of got stuck to my red blood cells”: Young peoples´ understanding of clinical markers in Type 1 Diabetes Barbara Johnson, Victoria Young, Samantha Brierley, Kinga Lowrie, Rebekah Ford, Kay Bottrell, Vanessa Whitehead, Christine Eiser, Simon Helle 15:00-15:30 Coffee 15:30-17:00 Parallel workshops: 1) Helping young people improve diabetes self-management uAud 1 Russell Viner & Deborah Christie UCHL, London, UK Chair: Ylva Tindberg 2) Evaluation of transition programmes uAud 2 Anna Nieboer & Janet McDonagh Erasmus University Rotterdam - Institute of Health Policy & Management, Rotterdam, the Netherlands University of Birmingham and Birmingham Children’s Hospital Foundation Trust, UK Chair: Helena Fonseca 17:00-17:15 Closing of the conference uAud 1

PROGRAMME 8 POSTER PROGRAMME

1. Watch me - feel me! Filmmaking - a method to reach young people and health practitioners. Jakob Højer Larsen

2. The Royal Children’s Hospital (Melbourne) Adolescent Transition Program: Design and implementation of an organisational- wide transition process for young people and their parents/carers Sarah Macnee, Evelyn Culnane, Jordan Hammond, Charlie Bowes

3. Transition from paediatric to adult care: Challenges in a qualitative meta-synthesis study Mette Spliid Ludvigsen & Liv Fegran

4. Aligning bottlenecks and interventions to improve transitional care from child- to adult care. H. M. Sonneveld, M. M. H. Strating, A. L. Van Staa, M. Roebroeck, A. P. Nieboer

5. Independent Youth Consultations in a CF out-patient clinic Teilmann G, Brinkløv C, Hertz P, Boisen KA, Skov M

6. On Your Own Feet: Development and validation of a generic self-efficacy scale for chronically ill adolescents Mathilde Strating & AnneLoes van Staa

7. Communicating with young patients - staff training in a tertiary hospital setting Boisen KA, Hertz PG, Blix C, Teilmann G

8. Transition in adolescents across disease and gender Jette Rolf Svanholm, Mette Spliid Ludvigsen, Hanne Aagaard

9. Health-related Quality of Life among Overweight Early Adolescents in Twelve European Countries Oya Ercan, Mujgan Alikasifoglu, Deniz Albayrak-Kaymak, Ozan Bakis, Carine Vereecken, Veronica Ottova, Ethem Erginoz, Martina Baskova, Ulrike Ravens- Sieberer, Namanjeet Ahluwalia, et al

10. Long-term consequences of congenital heart disease Morten Schrøder, Grete Teilmann, Kirsten A. Boisen, Jesper Reimers

11. HPV vaccination among Greek adolescent girls: coverage and awareness status Artemis Tsitsika, Eleni Tzavela, Fotini Mavromati,Erini Sakou, Vassiliki Dimitrakopoulou, Georgios Antonogiorgos, Dimitrios Kafetzis

12. HPV vaccination among Greek adolescents: an exploration of parental attitudes and factors affecting vaccination practice Artemis Tsitsika, Foteini Mavromati, Eleni Tzavela, Eirini Sakou, Vasiliki Dimitrakopoulou, Artemis Nomidou, Mariza Tsolia, Vana Papaevangelou, Dimitrios Kafetzis

13. Bone mineral density and its correlation with sex hormones in Greek healthy male adolescents Papaefthymiou M, Bacopoulou F, Zoumakis E, Bakoula C, Chrousos GP

9 PROGRAMME 1. Watch me - feel me! 14. Sometimes it´s cancer Filmmaking - a method to reach young people and health practitioners. Sam Smith and Lorraine Case Jakob Højer Larsen 15. Promoting health literacy and behavior in adolescent athletes: A pilot study 2. The Royal Children’s Hospital (Melbourne) Adolescent Transition Program: Design and implementation of an Meng-Che Tsai, Yen-Yin Chou, Shio-Jean Lin organisational- wide transition process for young people and their parents/carers Sarah Macnee, Evelyn Culnane, Jordan Hammond, Charlie Bowes 16. Young editors (Ungeredaktionen) Berit Nørgaard 3. Transition from paediatric to adult care: Challenges in a qualitative meta-synthesis study Mette Spliid Ludvigsen & Liv Fegran 17. Peers help Peers Violetta Shastina 4. Aligning bottlenecks and interventions to improve transitional care from child- to adult care. H. M. Sonneveld, M. M. H. Strating, A. L. Van Staa, M. Roebroeck, A. P. Nieboer 18. Volunteers in Hr. Berg - a special place for young people only Frederiksen FM, Blix C 5. Independent Youth Consultations in a CF out-patient clinic Teilmann G, Brinkløv C, Hertz P, Boisen KA, Skov M 19. Psychosocial functioning and habits of adolescents with eating disorders Artemis Tsitsika, Eleni Tzavela, Dimitrios Kafetzis 6. On Your Own Feet: Development and validation of a generic self-efficacy scale for chronically ill adolescents Mathilde Strating & AnneLoes van Staa 20. Is HEADS in our heads? Boisen KA, Hertz PG, Blix C, Teilmann G 7. Communicating with young patients - staff training in a tertiary hospital setting Boisen KA, Hertz PG, Blix C, Teilmann G 21. Disordered eating in young people with type 1 diabetes Victoria Young, Barbara Johnson, Samantha Brierley, Kinga Lowrie, 8. Transition in adolescents across disease and gender Rebekah Ford, Kay Bottrell, Vanessa Whitehead, Christine Eiser, Simon Helle Jette Rolf Svanholm, Mette Spliid Ludvigsen, Hanne Aagaard 22. Depression and diabetes distress in young people with type 1 diabetes. 9. Health-related Quality of Life among Overweight Early Adolescents in Twelve European Countries Samantha Brierley, Christine Eiser, Barbara Johnson, Victoria Young, Kinga Lowrie, Rebekah Ford, Kay Bottrell, Vanessa Oya Ercan, Mujgan Alikasifoglu, Deniz Albayrak-Kaymak, Ozan Bakis, Carine Vereecken, Veronica Ottova, Ethem Erginoz, Martina Whitehead, Simon Heller. Baskova, Ulrike Ravens- Sieberer, Namanjeet Ahluwalia, et al 23. International partnerships in the field of adolescent health research and training: development of youth 10. Long-term consequences of congenital heart disease friendly family medicine practices in Bosnia and Herzegovina. Morten Schrøder, Grete Teilmann, Kirsten A. Boisen, Jesper Reimers Anne Meynard, Daliborka Pejic, Ana Sredic, Senad Huseinagic, Françoise Narring, Lena Sanci, Dagmar Haller

11. HPV vaccination among Greek adolescent girls: coverage and awareness status 24. Significant differences in Patient-Perceived Quality between young people and their parents Artemis Tsitsika, Eleni Tzavela, Fotini Mavromati,Erini Sakou, Vassiliki Dimitrakopoulou, Georgios Antonogiorgos, Dimitrios Kafetzis Teilmann G, Rimdal B, Boisen KA

12. HPV vaccination among Greek adolescents: an exploration of parental attitudes and factors affecting vaccination practice 25. Evolution of a hospital-based youth service Artemis Tsitsika, Foteini Mavromati, Eleni Tzavela, Eirini Sakou, Vasiliki Dimitrakopoulou, Artemis Nomidou, Mariza Tsolia, Vana Donna Hilton Papaevangelou, Dimitrios Kafetzis 26. Youth Ambassadors: a network of trained nurses 13. Bone mineral density and its correlation with sex hormones in Greek healthy male adolescents Hertz P, Meinike D, Blix C Papaefthymiou M, Bacopoulou F, Zoumakis E, Bakoula C, Chrousos GP

PROGRAMME 10 Speakers´ ABSTRACTS

11 SPEAKERSSPEAKERS´ ABSTRACT ABSTRACTS - MONDAY AUD 1 - MONDAY 9.30

NOT JUST A PHASE - ENGAGING YOUNG PEOPLE IN HEALTH CARE

Damian Wood

The involvement of young people in health services has developed and grown over the last ten years and has followed in the wake of the increased recognition of the importance of the health of young people and the specific challenges they face in modern society. This growth in young people’s participation has often been organic with individual projects involving young people in imaginative and innovative ways. We are now at a point where we must Speakers´ reflect on the important principles guiding young people’s participation including: the evidence for its efficacy and the cost effectiveness, the methods and level of young people’s involvement and how best to evaluate outcomes. This will ensure your participation strategy results in the ethical and ABSTRACTS meaningful participation of young people and we achieve our goals of upholding their right to a voice in decisions which affect them whilst improving their health outcomes.

SPEAKERS´ ABSTRACTS - MONDAY 12 AUD 1 - MONDAY 10.45 (PARALLEL WORKSHOPS)

INVOLVING YOUNG PEOPLE IN STAFF TRAINING: AN INTERACTIVE WORKSHOP

Anne Meynard

Objectives: Describe the implementation of Methods: This workshop is an opportunity to an innovative training program using adoles- discuss practical experiences of working with cent simulated patients in Geneva university adolescent simulated patients and how to hospital’s Youth clinic. Review the recent implement such activities: recruiting, training litterature on adolescent simulated patient SP and running training sessions, advocate. programs. Model a training session using Participants will be able to experiment a train- simulated patients. ing session with an adolescent simulated patient and exchange experiences in this field. Introduction: Simulated (or standardized) patients (SP) are healthy people trained to play patients in a standardized way allowing objective assesment of students during medical studies and examinations (OSCE’s). In Geneva University there is a SP program only adressing adult health issues. Since 2005, we developped adolescent scenarios and trained young people for various projects that will be presented during the workshop.

13 SPEAKERS´ ABSTRACTS - MONDAY (PARALLEL WORKSHOPS) AUD 2 - MONDAY 10.45

ADOLESCENT HEALTH: FROM MONITORING TO INTERVENTION

Pernille Due & Bjørn Holstein

Objective: To demonstrate the importance of and how smoking can be met by school based epidemiological evidence on adolescent health. intervention. 2) Prevalence, secular trends and The workshop focuses on health and health risk factors for mental distress and the potential related behaviours in national representative for health promotion. 3) Prevalence and secular samples of young people and on quality of life trends in exposure to bullying and the associa- and participation in an international sample of tion between bullying and health problems. 4) children with cerebral palsy Quality of life and participation in daily activities among children with cerebral palsy and the Methods: We use data from two epidemiologi- importance of environmental factors. cal studies. 1) The Health Behaviour in School- aged Children (HBSC), an international study Conclusion: Large minorities of adolescents suf- which includes national representative samples fer from inappropriate health behaviours, health of students aged 11, 13 and 15 years. The last problems, and exposure to health hazards. study included 4,922 students from Denmark These problems are accessible to intervention and 200,000 students in 41 countries who and systematic monitoring helps to identify tar- answered the internationally standardised HBSC get groups. Chronically ill and disabled children questionnaire. 2) The Study of Participation of might experience the same quality of life, but a Children with Cerebral Palsy Living in Europe lower participation in daily activities, compared (SPARCLE) which includes 818 children with cer- to children in the general population. Parcipa- ebral palsy from nine European regions, studied tion and physical, social and attitudinal environ- twice when they were 8-12 years old and 13-17 ment vary in Europain regions and again, these years old by home visits. problems are accessible to intervention, e.g. by changes in the proximal environment. Results: We report four sets of analyses: 1) Prev- alence and secular trends in smoking behaviour

SPEAKERS´ ABSTRACTS - MONDAY 14 AUD 1 - MONDAY 13.00 (PARALLEL WORKSHOPS)

WHO´S AFRAID OF TALKING ABOUT SEX? SOME INTRODUCTORY REMARKS Christian Graugaard

Sexuality is a lifelong source of joy and existential curiosity and psychosocial development, and it meaning, and numerous studies have shown that may be argued that by proactively addressing a fulfilling sexual life contributes significantly to the sexual aspects of young patients’ lives we can the self-reported quality-of-life of both healthy in fact strengthen their self-esteem, resilience, and chronically ill adults. On the other hand, it coping competences, adherence and general is well documented that lack of sexual abilities tools of survivorship. This introduction outlines may impact negatively on existential coherence the importance of ‘ everyday sexology’ among and overall rehabilitation skills of patients. In youngsters and sets the stage for two subse- adolescence, sexuality is an important engine of quent examples from clinical practice.

THERE IS NOTHING SEXY ABOUT HIV! Tinne Laursen & Lotte Ørneborg Rodkjær Sexuality when being HIV-positive is practically to improve their quality of life, raise their morale invisible to the broader Danish public; and also and increase their self-esteem. for many healthcare providers. The young pa- This workshop will focus on how to create space tients tell us that it is difficult being young and for adolescents to talk about issues that are sel- HIV- positive, as they are afraid of their peers’ reac- dom addressed. tions to their illness and afraid of being rejected This will be an interactive workshop! by their potential partners. Most of the young Key messages HIV-positives do not disclose their HIV status. • Create room and take the initiative to talk about The result is that in comparison, to other young- sexuality sters in Denmark, the young HIV-positives strug- • Normalize thoughts, feelings and fantasies gle with an extra dimension to the normal chal- about sexuality lenges regarding boy/girl friends, sexuality and • Respect the great modesty, decency and give psychological problems. Being in the group of recognition of words young HIV-positives helps isolated young people

15 SPEAKERS´ ABSTRACTS - MONDAY (PARALLEL WORKSHOPS) AUD 1 - MONDAY 13.00

LET´S TALK ABOUT SEX Heleen van der Stege & AnneLoes van Staa

Objectives: The development of sexuality and their experiences in an evaluation questionnaire, intimate relations is delayed in many adoles- as did 12 professionals who acted as facilitators. cents with chronic conditions. Although discussing sexuality is part of good transitional care, Results: Eighty-five percent of adolescents providers in paediatric health care often feel found it (very) important to discuss sexuality unprepared for it. A previous study among 1039 and intimate relationships; 81% felt that SeCZ adolescents revealed that non-medical issues TaLK enabled this. Girls were more positive are rarely addressed during medical consulta- about the game than boys (p<.05) and younger tions (Van Staa, et al., 2010). Healthcare provid- participants were more positive than older ones ers find this topic very important, but need (p<.01). Youth in an outpatient clinic appreciated practical tools to facilitate the discussion. Aim the game most (p<.05). Professionals asserted is how to develop an attractive board game in discussing these issues important for their work a participative way bringing together expert and would recommend the game to colleagues. and experiential knowledge and to evaluate the Distribution and implementation of 500 games feasibility of a new educational board game. will be further evaluated.

Methods: A board game - SeCZ TaLK - was Conclusions: There is a real need to improve developed and pilot tested in small groups in communication about sensitive issues including special education and healthcare settings. The sexuality with adolescents with chronic condi- game develops knowledge, attitude and com- tions. SeCZ Talk is a promising tool for communi- municative skills. There are 264 items printed on cation with youth with special health care needs. 66 playing cards regarding four domains: Sexu- ality, Relationships, Your Body, and the Future. Eighty five adolescents with chronic conditions/ disabilities piloted the board game and assessed

SPEAKERS´ ABSTRACTS - MONDAY 16 AUD 2 - MONDAY 13.00 (PARRALEL WORKSHOPS)

PARTICIPATION – MAKING IT WORK FOR EVERYBODY Rebecca Sands & Fiona Straw Involving young people in health service devel- tools and ideas about how to develop a culture of opment and research is a fundamental part of participation, how to engage young people, and ensuring that services are high quality and meet ideas about how to maximise the benefits for all the needs of the people they serve. This interac- involved. tive workshop will provide some of the practical

PARTICIPATION OF ADOLESCENTS IN SURVEY RESEARCH: MAKING IT WORK FOR EVERYBODY Pierre-André Michaud Context & objectives: This presentation will focus on Results: the questionnaire was transferred on comput- the participation of nine individuals aged 16 to 18 years ers and dispatched in a country-wide random sample of age in a country-based survey on the sexual life of of classes built using a two stage cluster procedure. adolescents. Based on the answers of 4283 subjects aged 16 to 20 years belonging to high-schools or professional training Procedure: A four days meeting was set-up during centers, a draft report was prepared and discussed with which the participants were invited to list the main are- the participants during a two days meeting. Several as of concerns they felt should be covered. The content, participants took part in a press conference during wording and sequence of the question being of utmost which the main results were launched. Moreover, some importance, they were invited to role-play typical situ- of them also participated later in various presentations ations. They would not disclose their own situation, but to health professionals and experts from the social & rather were requested to bring all the issues as “recal” educational field. conversations with peers about typical situations (first kiss; discussion about contraception, HIV, having a peer Conclusion: involving adolescents in survey research asking for help because of suspected pregnancy, etc.). A from the early development of the project to the draft questionnaire was then built and, later, submitted diffusion of the results increases the relevance of the to the participants for comments and approval. content, the credibility of the results and their impact on professionals. And the experience is just great fun!

17 SPEAKERS´ ABSTRACTS - MONDAY Young patients meeting their doctors and nurses for lunch

18 AUD 1 - MONDAY 15.00 (PARALLEL ORAL SESSIONS)

ON WARD: A MOBILE PHONE APPLICATION FOR DIABETES SELF-MANAGEMENT AND TRANSITION Sandy Whitehouse, Ellen Balka, Mary Paone, Jennifer Greenhorn, Nireesha Prakash University of British Columbia, Vancouver, Canada [email protected]

Objective: There is a growing need for youth Results: The prototype, designed for iphone, of- driven, developmentally appropriate transition fers a portable space that can be individualized to tools. A significant challenge to youth with the youth´s interests. Youth record data, access diabetes is the inability to communicate about and monitor their health related information and their condition confidently and easily. Existing plan their events through common, age appropri- transition tools lack a youth focus and transition is ate youth scenarios. They can interact through a hampered by a lack of interoperability of health social network of other youth with similar health records. This study was undertaken to develop a needs and develop skills to manage their condi- mobile phone application that, through resource tion. Site tools include Medical Information, Diet information and supporting tools, focused on and Exercise, Calendar, Network, Drugs & Alcohol, easing the transition from youth to adult health- Media, Finances, Sex & Relationships, Jobs & Con- care and improving self-management. tacts. Quick Info provides access to emergency information. Optional reminders for medication Methods: Two design students interviewed plans can be automatically sent via text message. health care providers, youth with chronic conditions including diabetes to determine priorities Conclusion: Onward is a youth driven transition for an effective, engaging, portable transition tool prototype, providing context to a set of flex- tool. Themes of empowerment, accessibility, ible transition resources, allowing youth with knowledge and independence were identified as chronic conditions to become self-reliant, prepar- priorities. The design students engaged in a series ing them for the adult healthcare system. of co-creation sessions with youth to develop the tool. (A demonstration will accompany the presentation)

19 SPEAKERS´ ABSTRACTS - MONDAY (PARALLEL ORAL SESSIONS) AUD 1 - MONDAY 15.00

PARENTS OF ADOLESCENTS AND YOUNG ADULTS WITH SEVERE MOTOR AND INTELLECTUAL DISABILITY - experiences with (the preparation for) the transfer to adult care

G.C.B. Bindels-de Heus1, A.L. van Staa2,3, I. van Vliet2, F. Ewals1, S.R. Hilberink2 1) Erasmus MC - Sophia Children’s Hospital, University Medical Center, Department of Pediatrics, Rotterdam, the Netherlands 2) Rotterdam University, Expertise Center Transitions of Care, Rotterdam, the Netherlands 3) Erasmus University - Institute of Health Policy & Management, Rotterdam, the Netherlands [email protected] Objectives: Many children with severe motor and in- adult care coordinated the care and 22.1% stated there tellectual disabilities (SMID) reach adulthood, challeng- was no-one coordinating care. Parents were more ing the provision of adequate medical care for these satisfied with healthcare provided by the pediatrician vulnerable young people. This study explored 1) the than by adult care. Parents of patients still in pediatric number of young people with SMID that actually left care were more positive about his/her knowledge than the pediatrician, 2) parents’ experiences with (prepara- those who had no coordinating physician. Parents tion for) transfer to adult care, and 3) experiences and were not positive about their preparation for the trans- appreciation of parents of healthcare provided in the fer to adult care. transitional period. Conclusions: Transfer from pediatric to adult care in Methods: Convenience sample consisting of parents young people with SMID is often problematic and of young people with SMID. The inclusion criteria were about a quarter of them does not have access to a having a child (16-26 years), with intellectual function- care coordinator and experiences fragmented care. ing at an age of 2 years or less or an IQ below 30 and Although the provided care by the pediatrician was a GMFCS level of IV-V. Respondents completed a self- valued positively, preparations for transfer to adult constructed web-based questionnaire care was suboptimal. Pediatricians need to incorporate systematic preparation for parents to optimize transfer Results: 131 Parents completed the questionnaire. to adult care and to minimize the burden for parents. Parents reported a large number of medical problems A physician for people with intellectual disability could in their children. 22.1% reported their child was still be embedded in adult care to improve the quality of in pediatric care, 55.8% said that another specialist in care for this patient group.

SPEAKERS´ ABSTRACTS - MONDAY 20 AUD 1 - MONDAY 15.00 (PARALLEL ORAL SESSIONS)

TRANSITION FROM CHILD TO ADULT CARE: WHAT ARE THE PERCEPTIONS HELD BY ADOLESCENTS, PARENTS AND PROVIDERS?

GH. M. Sonneveld, M. M. H. Strating, A. L. Van Staa, M. Roebroeck, A. P. Nieboer Erasmus University - Institute of Health Policy & Management, Rotterdam, the Netherlands [email protected] Rotterdam University, Expertise Center Transitions of Care, Rotterdam, the Netherlands

Objective: Studies comparing three perspectives on tran- lower than parents do. Adolescents are, however, more sitional care for different kind of illnesses are lacking. The satisfied than their parents aim of the study was to explore (1) differences and about care process aspects such as coordination and com- similarities in perspectives between adolescents with munication between providers. Adolescents´ and parents´ chronic illnesses, their parents and providers on transi- satisfaction scores indicated that the care process offers tional care and (2) the extent to which such perspectives the most room for improvement. According to providers, are disease-specific. shortcomings in the care delivery process with respect to guidelines, protocols, and coordination occur most. Methods: Within the framework of a Dutch quality Providers also reported other improvement collaborative on adolescent health care: “On aspects such as adolescents´ lack of responsibility with Your Own Feet Ahead” the study included 127 adoles- regard to self-care and parents´ difficulties with ceding cents with rheumatic disorders, neuro muscular disorders, control to their children. Finally, adolescents with neuro or diabetes, 166 parents, and 19 care providers. Separate muscular disorders and their parents are less satisfied than questionnaires were developed for each group to assess all other groups about the providers´ level of expertise on experiences with transitional care. For the adolescents and the illness, and parents of adolescents with neuro muscu- parents the “Mind the Gap” instrument was used to assess lar disorders are less satisfied with the providers´ under- satisfaction with transitional care. For the providers a list standing of what it means to be a parent of an adolescent shortcomings in transitional care was developed. with a chronic illness.

Results: The study showed that adolescents rate their cur- Conclusions: Adolescents, parents and providers all rent care lower than parents on, for example, the oppor- report that there is room for improvement with regard to tunities from providers to make their own decisions and aspects of the care delivery process in transitional care. be seen without parents present. Adolescents also rated From a disease specific perspective we only found small providers´ honesty and social skills (talking, listening) differences.

21 SPEAKERS´ ABSTRACTS - MONDAY Personalizing a pill box

22 AUD 2 - MONDAY 15.00 (PARALLEL ORAL SESSIONS)

ENHANCING EFFECTIVE COMMUNICATION: DISTRIBUTION OF AND ASSOCIA- TIONS WITH Q-CARE PROFILES IN ADOLESCENTS WITH CHRONIC CONDITIONS

Susan Jedeloo1, AnneLoes van Staa1,2, On Your Own Feet Research Group1,3 1) Expertise Centre Transitions of Care, Rotterdam University, the Netherlands 2) Institute Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands 3) Erasmus MC University Medical Center - Sophia Children’s Hospital, Rotterdam, the Netherlands [email protected], Rotterdam University, Expertise Center Transitions of Care, Rotterdam, the Netherlands

Introduction: Chronically ill adolescents are seldom other profiles. Fit to any of the profiles is associated asked about their preferences for care, even though with age, gender, quality of life, impact of disease, they are frequent healthcare users and are expected self-efficacy, independent behaviour and readiness to take over responsibility for managing their own for transition. While the ‘Backseat Patient’ and the care after transition to adult care. Aim of this study ‘Worried & Insecure’ type feel less self-efficacious, was to investigate preferences for self care and the ‘Self-confident & Autonomous’ type is at risk for health care delivery, and subsequently develop an at- non-adherence. Parents & children’s assessments tractive tool for communication during consultations. correspond fairly well, but there are significant differences. Methods: A previous Q-methodological study revealed four distinct preference profiles for health Conclusions: The Q-care profiles are recognizable to care delivery and self-management: ‘Conscious adolescents and parents, and they discriminate fairly & Compliant’; ‘Backseat Patient’; ‘Self-confident & well. Healthcare providers welcome the QCP as a Autonomous’; and ‘Worried & Insecure’. To examine potentially suitable tool to stimulate communication the prevalence of these Q-care profiles (QCP) and to with adolescents. A practical manual for use of QCP explore the associations with adolescent characteris- during consultations was developed, including tips tics, a web-survey was conducted among adolescent for interventions to be used by healthcare providers patients (12-19 yrs) and their parents. Adolescents’ fit to address typical problems associated with each to the Abbreviated QCP descriptions was scored on profile. Further research into the applicability of this a five-point Likert-scale. new tool and the possibility to use the Q-care profiles Results: 990 adolescents and 778 parents responded. as a screening instrument for self-management fail- Adolescents recognize themselves twice as often ure is now underway. in the ‘Conscious & Compliant’ profile than in the

23 SPEAKERS´ ABSTRACTS - MONDAY (PARALLEL ORAL SESSIONS) AUD 2 - MONDAY 15.00

ENGAGING AND INVOLVING TEENAGERS IN CANCER SERVICE DEVELOPMENT; AN EXEMPLARY MODEL

Sam Smith and Lorraine Case Teenage Cancer Trust - The Christie NHS Foundation Trust, UK [email protected]

Objectives: During the last decade service user The Christie Crew have challenged practice and involvement has become integral to health service made contributions and changes to the develop- development. The Christie Crew is a Teenage and ment of TYA cancer services locally and nationally. Young Adult (TYA) Cancer Patient Service User group The model is now being replicated in other parts of developed to ensure young people who are often the U.K by healthcare organisations working with considered the “lost tribe” were given a “true voice” this patient group. by placing them at the heart of service development and delivery. Conclusion: The Christie Crew is a “real” example of the success that can be achieved through working Methods: Facilitated by healthcare professionals; the in partnership with young cancer patients. There is group was set up in 2004 and was the first TYA can- a plethora of literature and policy advocating the cer service user group of its kind to be developed in involvement of service users and the development the U.K. Initial meetings took place with 5 TYA cancer of service user groups; however explicit models on patients which has since developed to a core group how, when and where to engage users effectively of 16 members. Over 50 young people have been are lacking. Success over the past 7 years has result- active members since the group´s formation. The ed in the development of a TYA Service User Model group has had to adapt and change to overcome and a Service User Group with a national reputation difficulties and challenges not originally anticipated and is an exemplary model in effectively engaging at the outset. young people.

Results: Successful local and national projects have resulted in the development of a TYA service user model. Project success has been achieved in nurse education, patient advocacy and health promotion.

SPEAKERS´ ABSTRACTS - MONDAY 24 AUD 2 - MONDAY 15.00 (PARALLEL ORAL SESSIONS)

VALIDATION OF A QUESTIONNAIRE TO ASSESS THE YOUTH-FRIENDLINESS OF PRIMARY CARE SERVICES FOR RESEARCH PURPOSES

DM Haller1, A Meynard1, D Pejic2, A Sredic2, D Courvoisier1, N Perone1, LA Sanci3, F Narring1. 1) University of Geneva, Switzerland 2) Fondacija fami, Bosnia & Herzegovina 3) University of Melbourne, Australia [email protected]

Objectives: To validate an adolescent client Results: The validation process led to a 50 item questionnaire assessing the youth-friendliness tool with 7 subscales (the YFHS-WHO+ question- of family practices for a primary care research naire). Subscales´ Cronbach alphas ranged from project in Bosnia & Herzegovina (B&H). 0.76 to 0.99. Test-retest stability at one week was excellent (mean Kappa. 0.93). Construct valida- Methods: Items were adapted from two sources: tion was supported by the fact that family medi- a tool developed at WHO for quality control and cine services seeing a higher proportion of ado- improvement of youth friendliness of reproduc- lescents had higher scores on the questionnaire. tive health services and an instrument to assess The services with the highest and the lowest youth friendly primary care services in Australia. scores on the questionnaire were also those that An English-speaking international group of had been assessed by expert observers as having experts reviewed the list of items and those with many, respectively little youth-friendly character- the highest face validity were retained. They were istics using a pre-defined evaluation grid. translated / back-translated from English into the language of B&H. The questionnaire was amend- Conclusion: This study supports the validity of ed following pre-tests with adolescents of a the YFHS-WHO+ questionnaire for assessing the family practice in B&H. The stability and construct level of youth friendliness of family medicine validation were then conducted with 60 young services in research projects. This instrument will people in 6 different health services in B&H. Item be used in a randomized trial of the development response analysis on subscales was used to re- of youth friendly health services in B&H. Valida- duce the number of items in the questionnaire. tions in English and French are already planned for wider use of this tool in the future.

25 SPEAKERS´ ABSTRACTS - MONDAY (PARALLEL ORAL SESSIONS) AUD 2 - MONDAY 15.00

YOUTH-FRIENDLY HEALTH CLINICS IN RUSSIA: TEAM BUILDING APPROACH

Karina Vartanova UNICEF Moscow, Russian Federation Web: www.unicef.org [email protected]

Different studies and practical experience of effective cooperation between young volun- many organizations have shown that adolescents teers and health clinic personnel, a new training accept and perceive information best if it is deliv- format has been developed and successfully ered by their peers. Studies also show that young implemented in many Russian territories within people are interested in actively participating in Youth-Friendly Health Services programme of HIV/AIDS prevention and promoting a healthy UNICEF Russia. During 5-days, YFC staff and a way of life. Youth participation in the prevention group of young volunteers are trained together, and promotion activities of youth-friendly clin- as a team of equals regardless of rank and experi- ics (YFC) is considered as one of guarantees of a ence. Together they learn the mechanics of how clinic´s success, and that philosophy is incorpo- a YFC is established and function; the basics of rated into the regular working procedures of the prevention and counseling, communication skills, majority of YFCs in Russia. etc. Together they elaborate joint action plans At the same time one of the major barriers to and discuss the most effective ways of attracting youth involvement in health promotion and risky young people to the YFC. behavior prevention activities is the mentality of In spite of initial resistance, especially from highly adult specialists. The specialists have a traditional qualified physicians, this format proved highly perception of young people as not competent, effective, allowing teams not only to achieve a not reliable, and in many aspects “inferior” to common understanding of the main principles of physicians, nurses, psychologists, and other adult youth-friendly approach also to build trust and re- staff. spect between adult staff and young volunteers. To overcome these stereotypes and to build

SPEAKERS´ ABSTRACTS - MONDAY 26 AUD 1 - MONDAY 16.00

MEET THE EXPERTS

The Adolescent Advisory Board at the Center of Adolescent Medicine in Copenhagen will host a “meet the experts” session and we hope you will take this opportunity to participate in a fruitful discussion with the young experts.

The Adolescent Advisory Board consists of 10-15 young people with chronic or serious illnesses as well as healthy young people from non-profit youth organizations. The board is the expert panel for the Center of Adolescent Medicine in Copenhagen and the young persons participate with inspiration, experience, reflections and comments in ongoing and planned projects.

In the ”meet the experts” session we hope you will contribute with questions to and discussions with the young experts on daily life with a chronic or serious illness, how to communicate with young patients or anything else you ever wanted to discuss with the true experts of adolescent medicine.

27 SPEAKERS´ ABSTRACTS - MONDAY Speakers´Abstracts Tuesday

SPEAKERS´ ABSTRACTS - TUESDAY 28 AUD 1 - TUESDAY 9.00

STRESS IN PUBERTY AND ADOLESCENCE

George P. Chrousos

Early life, including the fetal, childhood, and pu- harmful homeostasis or cacostasis, that may result berty/adolescence periods, is characterized by in several behavioral and somatic disorders, includ- marked changes in growth and development. The ing, respectively, anxiety, depression, psychoso- former includes physical changes in stature and matic disorders and substance abuse, and obesity/ body weight, shape and composition, as well as the metabolic syndrome and osteoporosis. It may also process of puberty, and is usually completed by the produce sleep disturbances, including insomnia age of 14-16 years. The latter concerns the psycho- and excessive daytime sleepiness, and may impair social, intellectual and emotional maturation of the reproductive and immune functions. Developing individual, including completion of brain develop- children and adolescents are particularly vulnerable ment, and is finished by the age of 24-27 years. to the effects of chronic stress with both behavioral “Stress” defined as the “state of threatened or and biologic pathways involved in the connection perceived threatened homeostasis” may influence between chronic stress and obesity and metabolic growth and development, producing both concur- syndrome. Emotional “comfort” eating, lack of sleep, rent and/or future psychopathology. Stress is asso- impulsive behaviors and selection of specific foods ciated with activation of the Stress System com- often characterize stressed individuals and obese prised by the Hypothalamic-pituitary-adrenal Axis children and adolescents are frequently entan- and the Arousal/Sympathetic Nervous Systems. gled in a vicious cycle between distress impairing The stress system functions in a baseline, circadian self-image and distorted self-image maintaining fashion or on demand, in response to a stressor, and worsening distress. Early life stress may have and interacts with other systems of the organ- additional effects on the timing of pubertal mani- ism to regulate a variety of behavioral, endocrine, festations, cognitive and emotional development metabolic, immune, and cardiovascular functions. and final stature. The experience of perceived or real uncontrollable intense and/or prolonged stress is associated with chronic alterations in CRH, catecholamine and cortisol secretion and may lead to a pathologic,

29 SPEAKERS´ ABSTRACTS - TUESDAY Obesity treatment in adolescence seen from several perspectives Jens-Christian Holm & Helena Fonseca

(PARALLEL WORKSHOPS) AUD 1 - TUESDAY 10.15

INVOLVING YOUNG PEOPLE WITH CHRONIC CONDITIONS IN THEIR OWN HEALTH CARE Janet McDonagh and Marie McGee

Increasing the engagement of young people in their own healthcare is a desirable goal for the 15-20% of young people who have a long term health condition. This workshop will aim to explore what ways we, as health professionals, can engage such young people at all stages of their pathway of health care whether that be in their own home, at school, at the reception desk of the hospital or in the consultation with a health professional. Participants will have the opportunity to see a DVD created by young people in Birming- ham to portray their experiences and ideas as to how professionals can engage them more effectively. Facilitators and barriers to engagement of young people in their own health care will be considered and strategies to embed the promotion of positive youth development in day to day clinical practice will be discussed.

SPEAKERS´ ABSTRACTS - TUESDAY 30 AUD 2 - TUESDAY 10.15 (PARALLEL WORKSHOPS)

OBESITY TREATMENT IN ADOLESCENCE

Helena Fonseca Adolescents are at risk for a broad spectrum At the end, participants will be able to con- of weight-related problems including body sider strategies for utilizing dissatisfaction, disordered eating behaviors these tools to guide their clinical and public and obesity. The incidence and prevalence of health work with adolescents. overweight and obesity among adolescents, as well as the demand for treatment for these individuals and their families, is everyday increasing. Few, if any, effective treatments are available and the evidence base for preventive or therapeutic interventions is quite scarce. This session will cover weight and shape issues and how to address them with young people who are overweight, as well as best practice and evidence-based procedures for screening, assessment, and treatment at the clinical setting, including motivational and systemic strategies, will be discussed. Furthermore, the process of designing and implementing a multidisciplinary program with these teens and their families will be described.

31 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL WORKSHOPS) AUD 2 - TUESDAY 10.15

OBESITY TREATMENT IN ADOLESCENCE TREATMENT OF SEVERE CHILDHOOD OBESITY IN A CHRONIC CARE MODEL INCLUDING FATTY LIVER DISEASE AND OTHER COMPLICATIONS. Jens-Christian Holm Childhood obesity is endemic in prevalence 65% reduce their BMI SDS. In a 1-year period and is associated with considerable co- 164 obese children were selected and investi- morbidities. Treatment of childhood obesity gated with MR spectroscopy, which revealed has not yet been standardized with efficient that 45% of investigated patients had more methodologies and resultant acceptable than 5% fat in their livers. In an earlier study treatment results. In this context, increasing in Danish children with a mean BMI SDS of 2.8 age, low social class, severe baseline adiposity, and a mean age of 11.5 years; approximately and other associated diseases have all been 50% had either pre-hypertension or grad 1 or associated with less efficient treatment re- grade 2 hypertension. sults. Especially increased blood pressure and Childhood obesity treatment results, associ- fatty liver disease seems to increase in preva- ated complications, MC4R results, and a newly lence and thus seems to negatively influence developed pedagogic approach, which em- future health. phasize on empathy and structured tailored The Children`s Obesity Clinic is a multidisci- treatment advices will be discussed. plinary, tertiary, chronic care, best-practice based clinic, which include and treat obese children and youth in the age range of 3-22 years. There are no eligibility criteria or any other ways of filtering away children or youth with associated morbidity or conditions that might complicate obesity treatment. 1100 children and youth have been included in treatment with a mean BMI SDS of 3.03 and a mean age of 12.1 years. Over time, drop out rates increase to 25% and approximately

SPEAKERS´ ABSTRACTS - TUESDAY 32 On your own feet ahead - participation in transition AnneLoes van Staa

AUD. 1- TUESDAY 11.45

ON YOUR OWN FEET AHEAD: A quality improvement initiative to innovate dutch transitional care arrangements for adolescents with chronic conditions AnneLoes van Staa In the Netherlands, adolescents with chronic participated in the QIC by setting goals and conditions are often ill prepared for their tran- changing their own practice within 12 months. sition to adulthood and adult care. Research A variety of interventions are implemented, among recently transferred young adults and such as developing joint policies and treatment their parents revealed that they often felt over- protocols, appointing a transition coordinator, whelmed and unprepared, that services were setting up of a transition clinic, implementing not geared toward their needs and preferences. the use of Individual Transition Plans, and seeing Dutch health care providers also indicated an adolescents alone in the consultation room. A urgent need to improve adolescents’ preparation digital toolkit containing descriptions of suitable for self-management and social participation, interventions was developed. As more evidence and to enhance collaboration between paediatric for the effectiveness of these interventions and and adult services. for the QIC strategy in general is urgently needed, the effects of the programme are evaluated on To improve adolescent health care in the Neth- team, parent and patient level in an independent erlands, a national four-year innovation pro- evaluation study. gramme ‘On Your Own Feet Ahead’ was set up as a Quality Improvement Collaborative (QIC). This In this plenary session, we present the goals and is an attractive strategy, creating learning op- strategies employed in the QIC ‘On Your Own portunities for professionals, a bottom-up model Feet Ahead’. Using preliminary results from the for change and permitting them to spend time evaluation studies including the Best Practices on testing changes and experimenting with new research, we discuss successes and challenges behaviour. encountered in making adolescent care more Since 2009, 30 multidisciplinary teams from 25 patient-centred and empowering adolescents for different hospitals and rehabilitation centres new social roles.

33 SPEAKERS´ ABSTRACTS - TUESDAY AUD 1 - TUESDAY 13.15

YOUNG PEOPLES´ HEALTH AS WHOLE-OF-SOCIETY RESPONSE. EVIDENCES Youth friendly health policies and services in the European Region FOR GENDER RESPONSIVE ACTIONS Valentina Baltag Valentina Baltag WHO/Europe supports Member States in im- that interventions need to be gender respon- proving adolescent health by recommending sive in order to be successful. The new WHO comprehensive, multisectoral and evidence- tool looks therefore at actions at various levels informed adolescent health approaches; by such as cross-sector policies, families and delineating the critical contribution of the communities actions, and interventions by health sector; by fostering actions towards re- health systems and health services. ducing inequalities; and by addressing gender as a key determinant of adolescent health.

WHO/Europe report will focus on the specific contribution that health systems and other sectors can make in tackling adolescent health and development priorities as dictated by epidemiological trends. A new WHO tool will be presented that summarizes current knowledge on what works in preventing and managing priority health and development problems and needs such as social and emotional well-being, chronic conditions and disabilities, adolescent pregnancy, HIV/ STIs, mental health, overweight and obesity, violence, injuries and substance abuse. The report will argue that young people health is the responsibility of the whole society, and

SPEAKERS´ ABSTRACTS - TUESDAY 34 AUD 1 - TUESDAY 14.00 (PARALLEL ORAL SESSIONS)

SEXUAL BEHAVIOR PROFILES: DUTCH HIV POSITIVE YOUTHS PREFERENCES ABOUT SEXUALITY

Susan Jedeloo1, Linda van der Knaap2 1) Rotterdam University of Applied Sciences, Centre of Expertise Innovations in Care, Rotterdam, the Netherlands 2) Erasmus MC-Sophia Children’s Hospital, University Medical Centre, Department of Pediatrics, Rotterdam, the Netherlands [email protected]

Introduction: Adolescents with HIV are chal- Results: Thirty of forty-eight eligible HIV infected lenged when it comes to exploring their sexual- adolescents (12-21 years) treated in one of the ity. Little is known about how HIV positive youth five Dutch HIV-centers participated (response perceive their sexual behavior and, specifically, 63%). Five different profiles on sexual health and safe sex. safe sex were uncovered, which were named: “Responsible and Optimistic”, “Influenced by Cul- Methods: To uncover these perceptions, a Q- ture & Religion and Closed”, “ ‘Open’ and Sociable”, methodological study was conducted. A repre- “Responsible and Anxious”, “Religious and Happy”. sentative list of statements on sexual behavior Profiles differ in themes like role of culture and was developed and evaluated by domain ex- religion, importance of friends, and disclosure. perts. During a regular outpatient visit, trained nurses asked Hiv positive youth to rank-order a Conclusion: The SBP show different preferences sample of 45 statements and to motivate their and attitudes towards sexual health and safe ranking. By-person factor analysis was conducted sex, implying different needs for counseling. It is to identify factors of sexual behavior prefer- recommended that nurses who work with HIV ences. To elicit other information that may have positive youth, take a pro-active role in discuss- a bearing on the interpretation of the factors a ing sexual health according to the specific needs short questionnaire was administered. The factor of that youth. The SBP could be applied as a tool scores and motivations were used to describe the by letting youth score their fit to the profiles on a Sexual Behavior Profiles (SPB). five-point likert scale, using the results for discussion. The applicability of such a SBP-instrument in daily clinical practice should be further explored.

35 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL ORAL SESSIONS) AUD 1 - TUESDAY 14.00

ADDICTIVE INTERNET BEHAVIORS (INTERNET ADDICTION) AMONG GREEK ADOLESCENTS: Association with high risk internet behaviors and psychosocial development

A.Tsitsika1, E. Critselis2, G. Kormas1, V. Dimitrakopoulou1, D. Bikouli1, K. Athanasiou1, M. Janikian1, E. Tzavela1, G. Antonogeorgos1, G. Kavvadias1, D. Kafetzis2 1) Adolescent Health Unit, Second University Department of Pediatrics, “P. & A. Kyriakou” Children’s Hospital, National and Kapodistrian University of Athens School of Medicine 2) Second University Department of Pediatrics , “P. & A. Kyriakou” Children’s Hospital, National and Kapodistrian University of Athens School of Medicine [email protected] Introduction: The internet is an enticing means into AIB. The primary and secondary reasons for for information, education, and entertainment. utilizing the internet among adolescents with However, addictive behaviors (Internet Addic- AIB were social networking and online gaming, tion) have already been reported with numerous respectively. The majority (63.7%) of adoles- risks upon the psychosocial development of ado- cents (100% among AIB) would upload personal lescents. The study objective was to assess the information on the internet, while 18.5% would association between addictive internet behaviors pursue meeting a cyber-friend in real-life situa- (AIB) with other high risk internet behaviors, tions (74% of adolescents with AIB). Adolescents along with the consequences upon the psycho- with AIB more frequently participated in internet social development of Greek adolescents. gambling and utilizing the internet for porno- graphic internet sites (p<0.001). Finally, maladap- Methods: A cross-sectional study was conducted tive internet use was associated with anxiety and in Greece among adolescents in 9th and 10th depressive symptoms, while AIB was associated grades during the academic year 2009-2010. The with delinquent and aggressive behaviors. study population included 1007 adolescents, including 414 boys and 464 girls (mean age: 14.85 Conclusions: Adolescents with AIB develop years). The assessment tools applied for the study an adverse relationship with the internet, thus objectives were the Young Internet Addiction Test negating boundaries and developing high risk and the Achenbach CBCL questionnaire. internet behaviors. Furthermore, problematic internet use is associated with notable adverse Results: Among the study population 2.4% of effects upon the psychosocial development of adolescents had (AIB) and 19.1% had maladap- adolescents. tive internet use which may potentially develop

SPEAKERS´ ABSTRACTS - TUESDAY 36 AUD 1 - TUESDAY 14.00 (PARALLEL ORAL SESSIONS)

CHANGES BETWEEN SUBSTANCE USE GROUPS IN THE TRAJECTORY BETWEEN ADOLESCENCE AND YOUNG ADULTHOOD

JC Suris, A Berchtold, C Akre, M Wilson, A Mialon Research Group on Adolescent Health, Institute of Social and Preventive Medicine, University of Lausanne, Switzerland [email protected]

Background: There is evidence indicating that Results: Overall, the mean ES was 1.38 [95% CI: adolescents´ substance use behavior changes 1.28/1.48] for the whole sample, with a slightly over time. The objective of this research is to as- lower, but not significant, mean for females sess the number of changes between substance (1.34 [1.21/1.47]) compared to males (1.42 use groups in the trajectory between [1.27/1.57]). Subjects in the CO group were the adolescence and young adulthood depending least likely to stay in their group over time (only on the type of use at age 16. 1.1% of them did not change) while those in the NTNC group were the most likely to remain Methods: Data were drawn from the TREE co- in their group (52.3%). TO (31.8%) and TAC hort, a longitudinal study of 2954 (26.1%) were in between. Conversely, 27.5% of youths followed yearly from 2001 (T1, age 17 CO had changed 4 or more times compared to years) to 2007 (T7, age 23). 6.7% among NTNC. Again, TO (13.2%) and TAC An “experimentation score” (ES, ranging from (11.8%) showed values in between. No signifi- 0 to 6) was created based on the number of cant differences were found by gender. changes from one substance use group to another for the whole sample and for each of the Conclusions: Young people change frequently four substance use groups: cannabis only (CO, from one consumption group to another be- N=68), tobacco only (TO, N=782), tobacco tween the ages of 16 and 22 and the number of and cannabis (TAC, N=545) and none (NTNC, changes differs depending on the type of con- N=1559). sumption at baseline. This finding would seem to confirm that a fair amount of youths mainly experiment with substances, no matter what their initial type of use is.

37 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL ORAL SESSIONS) AUD 1 - TUESDAY 14.00

WHY YOUNG CHILDREN DIE?

Onno L.Sijperda1, Liesbeth Oonk2, Ad Kerkhof2, Magda Boere-Boonekamp3 1) Youth Health Service Zwolle 2) VU University Amsterdam 3) Twente University [email protected]

Summer 2010 Forensic Doctors in The Nether- The main objective of this first inquiry, a pilot lands reported a possible increase of suicidal be- study, has been to examine the feasability of this haviour among young children and adolescents, method of data collection from the three and especially under the age of 16. So we got services and to find a set of characteristics of into contact with some experts and we started which we hope to make a suitable categorisation. a study together with the University of Enschede Further national investigations wil follow in the and VU University Amsterdam: Documented years to come. files of young people under the age of 23 were The data collection should be according to the investigated: Files over the last ten years from the “Child Death Review” teams as installed in En- departments of Youth Health and Forensic Medi- schede (NL) and Warwick (UK). cine of two Health Services (Zwolle and Amster- Since january this year in The Netherlands the dam) and from the Youth Mental Health. NODO-procedure is obligatory for all cases of As much as 116 young people committed suicide Child Death: All doctors have to report the in Amsterdam and Zwolle. death of the children to the Forensic Department We found characteristics in all domains of life of in the Regional Health Service. However there is these youngsters: family, social support, develop- not a system available yet to work out these data mentaldisorders, school etc.. in a scientific epidemiological way. Special results were the time of the year, the un- Thus our investigation can be the start of a derlying personality and psychological problems, National Child Death Review for all Children from and the way of suicide. Not yet all the files are 0-23 years of age. availailable on this moment. We expect to have the final results next autumn.

SPEAKERS´ ABSTRACTS - TUESDAY 38 AUD 2 - TUESDAY 14.00 (PARALLEL ORAL SESSIONS)

TREE OF LIFE PROJECT FOR YOUNG PEOPLE WITH DIABETES Lucy Casdagli, Glenda Fredman and Deborah Christie Children and Young Persons Diabetes Service, UCLH, UK [email protected]

Type One Diabetes is a chronic condition which “single storied” accounts of loss. creates demands on everyday life for young Through drawing, the participants´ use the meta- people. These include the need for regular test- phor of the tree to tell their stories of their daily ing of blood sugars, injections and monitoring lives, skills and abilities, hopes and dreams and food intake in order to control blood glucose identify important people to them. The different levels. Poor diabetes control can lead to serious parts of a tree are used as “hooks” upon which to long term health complications. For many young attach these stories. The impact that diabetes has people diabetes dominates their world. had on people´s lives and ways of managing are The UCLH diabetes service offers an integrated then discussed. medical and psychological approach to support- Feedback from young people: ing children, young people and families living “Lets you talk about serious stuff in a fun way” with these challenges. “You realize what you do to keep going” We have recently introduced the “Tree of Life” “I´ve never spoken to anyone else with diabetes... project as a way to help young people come to- quite wow!” gether to identify their strengths, share and learn Young people have been involved in shaping from each other so as to find different ways of the project and have designed a leaflet for use as living with diabetes. The project is a day event for promotion. After attending as participants young young people with diabetes aged 13-19. people are invited to a peer training session to The “Tree of Life” is a narrative approach devel- qualify as peer trainers and then facilitate further oped through working with traumatised children days. who had lost parents to HIV/AIDS (Ncube, 2006; The presentation describes the philosophical Denborough, 2008). The approach provides a background to the project and will offer exam- “safe place to stand” where children can tell their ples of young people´s “trees” as well as feedback stories and at the same time acknowledge their from the days. abilities, hopes and dreams, as opposed to giving

39 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL ORAL SESSIONS) AUD 2 - TUESDAY 14.00

SCREENING FOR ADOLESCENT VULNERABILITY IN THE EMERGENCY DEPARTMENT: A MISSED OPPORTUNITY Eleftheria Konstantoulaki, Rebecca Goldschmidt, Sophie Khadr, Rebecca Salter, Ian Maconochie, Andrea Goddard Imperial College London, UK [email protected] Introduction: Adolescent attendances at the Results: Of the 100 adolescents, 55 were boys. Emergency Department (ED) provide an important 51 patients were accompanied to the ED by a opportunity to identify areas of vulnerability. parent or carer. 32 were brought in by ambu- lance. 64 patients received a medical or surgical Objectives: (1) To determine whether clinicians in diagnosis. Other diagnoses included accidental Paediatric and Adult EDs screen adolescents for vul- injury in 21, physical assault in 13 and alcohol nerability factors. (2) To evaluate any differences in intoxication in 6 (some had >1 diagnosis). screening between Paediatric and Adult ED settings. Only 28/100 adolescents were screened for any Methods: One hundred patients aged 14-17 vulnerability factor; 22 in the Adult ED compared years, randomly selected by date of attendance with 6 in the Paediatric ED (p=0.0007). More boys between 14-01-2011 and 14-03-2011, were (n=17) than girls (n=11) were screened (p=0.51). retrospectively analysed. Fifty presented to the Of the 28 adolescents who were screened, 25 Paediatric and 50 to the Adult ED at a London were asked about alcohol use, 24 about smoking, teaching hospital serving a diverse popula- 14 about drug use and 6 (all girls) about sexual tion. Demographic characteristics, reason for activity. and mode of presentation were recorded. ED records were reviewed to evaluate the nature of Conclusions: Clinicians are failing to screen con- any screening for vulnerability factors: alcohol, sistently for adolescent vulnerability, particularly drugs, sexual activity, bullying and involvement in the Paediatric ED setting. Proformas and train- with social services or the youth offending team. ing are needed to prompt vulnerability screening Results were analysed for frequency and quality and trigger an appropriate response. of screening of patients in Adult versus Paediatric ED and differences according to gender.

SPEAKERS´ ABSTRACTS - TUESDAY 40 AUD 2 - TUESDAY 14.00 (PARALLEL ORAL SESSIONS)

AN INNOVATIVE ELECTRONIC SCREENING TOOL FOR ADOLESCENTS WITH CHRONIC CONDITIONS.

Sandy Whitehouse, Ellen Balka, Mary Paone, Shelagh McLennan University of British Columbia, Vancouver, Canada [email protected]

Objectives: Adolescents with chronic conditions Results: The screening tool is an electronic appli- face the same risks as their healthy peers. They cation. It uses simple, non-judgmental questions also need to acquire developmentally appropri- related to demographics, future plans, risk taking ate skills to manage their health. Clinicians face behaviors and self-management skills. Responses challenges in the length of time it takes to deter- are touch or slide icons and emoticons. Respons- mine the adolescent’s risks and self-management es can be forwarded to the health care provider skills. Adolescents are sometimes uncomfortable electronically and translated onto a word docu- in responding about risk behaviors. This study ment table for review. was undertaken to develop an electronically Adolescents and providers universally responded based screening tool for adolescents to use in the positively to the prototype and icons. They felt waiting room to assess risk factors and self-man- adolescents were likely to answer the questions agement skills prior to the clinical encounter with more honestly than in a face to face interview the health care provider. with a health care provider.

Methods: A collaborative relationship was es- Conclusions: This tool has the potential to tablished between Emily Carr Institute of Art and improve consistency of screening questions, Design, and the Division of Adolescent Health, improve uptake of clinical information, allow University of British Columbia. A design student tracking of data electronically and reduce clinical interviewed health care providers at BC Children’s consultation times. Hospital and adolescents with chronic illness to determine the features necessary for an effective A prototype of the tool will be demonstrated. screening tool. A prototype tool was developed using a co-creation model and user trials.

41 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL ORAL SESSIONS) AUD 2 - TUESDAY 14.00

“THE AMOUNT OF SUGAR IN MY BLOOD OVER THE LAST 3 MONTHS THAT HAS SORT OF GOT STUCK TO MY RED BLOOD CELLS”: Young peoples´ understanding of clinical markers in Type 1 Diabetes Barbara Johnson 1,2, Victoria Young 1,2, Samantha Brierley 1,2, Kinga Lowrie 1, Rebekah Ford 1, Kay Bottrell 1, Vanessa Whitehead 1, Christine Eiser 1,2, Simon Heller 1,3 1) NIHR CLAHRC for South Yorkshire, UK 2) Child and Family Research Group, Department of Psychology, University of Sheffield, Sheffield, S10 2TP, UK 3) Academic Unit of Diabetes, Endocrinology and Metabolism, School of Medicine and Biomedical Sciences, Beech Hill Road, Sheffield, S10 2RX, UK [email protected] Background and Objective: Glycated Haemoglobin When asked about their ideal HbA1c 88% of YP reported (HbA1c) is the main clinical marker to assess self-man- 7.5 or below. Only 2 YP did not describe of HbA1c. Most agement of Type 1 Diabetes (T1D). Understanding of, said it was “an average”, spanning around 3 months. education about, and knowledge of HbA1c are related Some outlined its purpose “[to check] whether I´ve kept to self-management behaviours and actual HbA1c. This good control over my diabetes” while others mentioned study examines understanding and accuracy of reported its impact “it plays on my mind when it is nearer to clinic”. HbA1c among young people (YP) with T1D attending transition clinics. Conclusions: Understanding of what HbA1c is and target level of HbA1c is high. However, when compared with Method: 79 YP (aged 15-21 years) completed a question- actual HbA1c results knowledge of their HbA1c is low. naire asking for their latest HbA1c, their own and their This may suggest that although YP can provide a one- doctor´s opinion of this result, a description of HbA1c, line answer explaining HbA1c they may not understand whether they are worried by high and low blood sugar the relevance of it to them. As many of these YP were levels, and at what levels blood glucose are considered diagnosed in early childhood, education was delivered to worryingly high and low. Reported HbA1cs were checked parents so further education for YP may be needed to infor accuracy. Descriptions of HbA1c were coded for crease knowledge in order improve to self-management. understanding. Content was analysed for the biology [This abstract presents independent research commis- behind, purpose of, and emotional responses to HbA1c. sioned by the National Institute for Health Research (NIHR). The views expressed in this abstract are those of Results: 64 YP reported their latest HbA1c score. These the authors and not necessarily those of the NHS, the ranged from 6 to 14 (M=9.33, SD=1.89). 79.7% of the NIHR or the Department of Health] HbA1c levels were above the recommended level of 7.5.

SPEAKERS´ ABSTRACTS - TUESDAY 42 AUD 1 - TUESDAY 15.30 (PARALLEL WORKSHOPS)

HELPING YOUNG PEOPLE IMPROVE DIABETES SELF-MANAGEMENT Deborah Christie & Russell Viner

Diabetes is an oppressive disease that impacts The use of motivational interviewing and on how developmental tasks of adolescence focussing on what young people are already are negotiated by the young person (and doing well will be demonstrated through the survived by parents and physicians!!!). Often description of a structured education inter- ‘coping well’ is afforded such a positive con- vention programme, which combines motiva- notation that to admit that things might be tional enhancement techniques and solution difficult can be hard for everyone. In between focused therapy. ‘fantastic copers’ and ‘complete disasters’ lie a number of young people whose visits to clinic (often missed) suggest that what is ‘good- enough’ for them isn’t ‘good-enough’ for labo- ratory tests of control.

The workshop will explore how identifying the importance, confidence and priority of change for the young person can help with engagement in therapy and inform treatment models. We suggest that this requires a shift from thinking of control as being good or bad but is better expressed on a continuum of control dictated by life style, aspirations, support and ultimately motivational stage.

43 SPEAKERS´ ABSTRACTS - TUESDAY (PARALLEL WORKSHOPS) AUD 2 - TUESDAY 15.30

EVALUATION OF TRANSITION PROGRAMMES

Anna Nieboer & Janet McDonagh

Transition programmes aim to improve transi- and uses a single conceptual framework, em- tion from child to adult care of adolescents ploying comparable structure, process, and with chronic illness. Although evidence on outcome measures, and combining qualita- the effectiveness of Transition programmes tive and quantitative research methods. is partly available, many questions still remain. We need a better understanding of (1) the mechanisms of transition care, (2) the feasibility, and effectiveness of transition programmes to improving health care, (3) the factors that determine success and failure of transition programmes and at an individual level, (4) better tools to determine transition readiness of both young person and parent. This workshop will aim to explore the evaluation of transitional care programmes from an individual clinical service perspective as well as that of research. Participants will have the opportunity to share their own experiences, whether clinical and/or research, as well as hear of those of the facilitators. The latter includes a Dutch quality improvement collaborative on adolescent health care: “On Your Own Feet Ahead” which included thirty-four transition care teams in various Dutch regions

SPEAKERS´ ABSTRACTS - TUESDAY 44 Designing a personal in-ward Room

45 POSTER ABSTRACTS Poster Abstracts

POSTER ABSTRACTS 46 1

WATCH ME - FEEL ME! FILMMAKING - A METHOD TO REACH YOUNG PEOPLE AND HEALTH PRACTITIONERS Jakob Højer Larsen Center of Adolescent Medicine Copenhagen University Hospital Rigshospitalet, Denmark

It all started as a fun activity with a young about body image, his experiences with the patient. He was admitted to hospital because treatment, how he felt about taking medica- of the need of a bone marrow transplantation. tion and having tubes piercing his body, how During his isolation period we decided to to handle parents, nurses and doctors, dreams record some of our activities on video to kill of the future, friends and relationships and life boredom and waiting time – making a “You- as an adolescent in general. tube look-alike”. We – the young patient, his father and I - re- The video was a form of documentation on corded a game of ping-pong in the isolation the psychosocial work, which can be rather room and again a game the first time he was complex to measure in numbers and figures. allowed to leave his isolation. The inspiration The video has been shown to nurses, doctors of using a camcorder to record the activities and other groups during lectures as a “video was fostered by the work of Michael Rich (the voice” to bring awareness on adolescents VIA project). admitted to hospitals. Maybe working on an ongoing project during hospitalization cre- The exciting part followed afterwards. During ates a developmental space for adolescents the cutting and editing in the simple Windows do form their identity and reduce psychoso- Moviemaker programme installed on almost cial traumas and stress? every computer, the young patient had the opportunity to explore himself and his situation. The process created a vast number of talks about health topics and youth topics in a psychosocial context. What we saw on the computer screen gave us the catalyst to talk

47 POSTER ABSTRACTS 2

THE ROYAL CHILDREN’S HOSPITAL (MELBOURNE) ADOLESCENT TRANSITION PROGRAM: DESIGN AND IMPLEMENTATION OF AN ORGANISATIONAL-WIDE TRANSITION PROCESS FOR YOUNG PEOPLE AND THEIR PARENTS/CARERS Sarah Macnee, Evelyn Culnane, Jordan Hammond, Charlie Bowes [email protected]

The RCH (Melbourne) Adolescent Transition Pro- between the specialty team, adolescent transition gram aims to provide uninterrupted holistic care, team and the adult health service. The pilot has support and education for young people and their a robust evaluation framework with pre and post parents/carers as they transition from paediatric evaluation questionnaires for the paediatric mul- to adult health care. Fundamental to this program tidisciplinary team, the adult service multidiscipli- is the understanding that transition is a process nary team, the young person and the parent/carer. which takes place over many years involving preparation, skill acquisition and follow up once they The RCH adolescent transition team includes a have entered the adult service. manager with a nursing and research background, an adolescent health nurse, an educator and a The Adolescent Transition Pilot is a hospital-wide youth mentor who is a past patient with a chronic initiative to implement and evaluate an adolescent condition. This innovative program is one of the transition model of care. It was created following first organisational wide implementations of a extensive stakeholder consultation and feedback transition model of care and is underpinned by the and continues to be informed by a collaborative understanding that this transition is a significant study with the Centre for Adolescent Health involv- change event in both the life of the young person ing young people and parents/carers from over 15 and the parent/carer requiring significant planning chronic illness groups who were formerly engaged and support from all members of the multidiscipli- in RCH care. A resource and education package was nary team. developed for young people and parents/carers in consultation with medical, nursing, and allied For further information about the program and its health staff as well as young people, parents, pri- resources, visit: mary care and adult health service representation. www.rch.org.au/transition

This pilot program commenced in July 2010. Transi- tion clinics with a number of RCH departments are being established, involving close collaboration

POSTER ABSTRACTS 48 3

TRANSITION FROM PAEDIATRIC TO ADULT CARE: CHALLENGES IN A QUALITATIVE META-SYNTHESIS STUDY

Mette Spliid Ludvigsen og Liv Fegran [email protected]; [email protected]

Despite numerous transition programmes aged eight to thirty-five years with a variety and other initiatives, the literature indicates of chronic conditions. A range of qualitative that there are still challenges in the transition methodologies were used in the individual from the paediatric to adult care for adoles- studies. cents and young adults with a chronic condi- A challenge in the meta-summary was to tion. We hypothesized that research had not identify studies in which the voice of the ado- focused sufficiently on the transition process lescents and young adults was not mixed up seen from the perspective of the patients. with other stakeholders such as parents and health care professionals. Another challenge Objectives: To summarize and synthesize was appropriate decision-making procedures findings of experiences related to the transi- to select good quality and relevant qualitative tion process from paediatric to adult care studies for the purpose of a meta-synthesis. among adolescents and young adults with a chronic condition. Conclusions: Issues as scarce or no quota- Studies should describe experiences with an tions, lack of description of analysing proce- accomplished transfer, both anticipations as dure and/or data do not originate from the well as experiences of the actual transfer. young people themselves challenged the inclusion of studies for the meta-synthesis. Methods: In a qualitative meta-synthesis, we Further a low proportion of studies included have so far completed a meta-summary of the the voice of the adolescents and the young findings. Methodological challenges conduct- people. Therefore more research focusing ing a qualitative meta-synthesis will also be explicitly on the young peoples´ experiences addressed. and needs should be conducted to broaden our perspective and professional efforts in Findings: We included 21 qualitative stud- their health transition processes. ies and data was collected from 441 people

49 POSTER ABSTRACTS 4

ALIGNING BOTTLENECKS AND INTERVENTIONS TO IMPROVE TRANSITIONAL CARE FROM CHILD- TO ADULT CARE

H. M. Sonneveld, M. M. H. Strating, A. L. Van Staa, M. Roebroeck, A. P. Nieboer [email protected]

Objective: The aim of the study was 1) to by providers to tackle bottlenecks on organi- investigate satisfaction of transitional care of zational level and or adolescent (patient) / adolescents with chronic illness before and parent level. Providers chose to implement 1) after implementation of interventions 2) to an individual transition plan, 2) a transition- investigate to what extent satisfaction with coordinator or 3) a transition clinic. transitional care is related to better alignment Furthermore (preliminary) results show (small) between interventions and existing bottle- differences in the level of satisfaction of necks. adolescents before and after implementation. Additional results concerning the differences, Methods: Within the framework of the Dutch and if they are related to (better) alignment Innovation Program: “On Your Own Feet between interventions and bottlenecks, will Ahead” (Quality Improvement Collaborative) be available at the conference. data of adolescents was collected before and after implementation of interventions. To as- Conclusions: This study gives more insight sess the satisfaction of transitional care the into the interventions used in transitional “Mind the Gap” instrument (Shaw, 2006) was care and to what extent satisfaction of care is used. In addition we used a list of shortcom- related to (better) alignment between inter- ings and facilitators of transitional care to ventions and bottlenecks. investigate bottlenecks by providers. Further providers were offered by advisors and experts to select intervention(s) from a toolkit to tackle existing bottlenecks.

Results: Preliminary results show that mainly three kinds of interventions were selected

POSTER ABSTRACTS 50 5

INDEPENDENT YOUTH CONSULTATIONS IN A CF OUT-PATIENT CLINIC

Teilmann G1, Brinkløv C1, Hertz P1, Boisen KA1, Skov M2 1) Center of Adolescent Medicine 2) Danish Child Lung Center, Department of Paediatrics and Adolescent Medicine Copenhagen University Hospital, Rigshospitalet, Denmark

Background: Independent visits in the out-patient Results: During the study period, 373 consultations clinic are one of the elements recommended as a were carried out, 68,4% were Independent, 13,7% part of Youth Friendly Health Service and has been were Not Independent and 18,0% were Unknown. shown to be a marker of successful transition. During the study period the proportion of Independ- ent consultations increased markedly from 52% in Aim: We aimed to establish Independent Youth Con- the start to 69% in the end of the study period. sultations (IYC) for young persons (YP) with Cystic Fi- Overall, the doctors were very content with the in- brosis, offering the YP time alone with the staff in part troduction of IYC and they would recommend IYC to of the consultation. In addition, we aimed to monitor other doctors working with YP. to which extent visits were carried out as planned The doctors identified several themes in their and to evaluate how the doctors experienced the IYC evaluation: in daily pracsis. • IYC give a better understanding of the individual YP´s disease knowledge Methods: IYC: From January-Dec 2010, all young • Some YPs are challenging to communicate with people (YP) aged 12-18 with CF who were followed • Continuity has high impact on confidentiality at Danish Child Lung Center, Rigshospitalet (N=39) • It is challenging to adapt to new routines in a busy were offered IYC at every visit in the clinic. YP and clinical setting their parents/caretaker were informed about the new • IYCs takes longer time than usual consultations structure by letter and orally. Monitoring: At each visit the staff registered if the YP Discussion and conclusion: Implementation of IYC was seen independently in part of the consultation was a demanding but very fruitful process. Doctors (Independent), or if parents/caretakers accompanied evaluated IYC to be a positive and rewarding new the YP during the whole consultation (Not Independ- structure. Evaluation by YPs, parents/caretakers and ent). nurses are important future perspectives. Continu- Evaluation: 6/9 doctors involved in the project were ously discussions of the procedures as well as moni- interviewed in May 2011 about their experiences toring of the effort are necessary. of introducing IYC. Interviews were transcribed and analysed according to qualitative methods (CB).

51 POSTER ABSTRACTS 6

ON YOUR OWN FEET: DEVELOPMENT AND VALIDATION OF A GENERIC SELF- EFFICACY SCALE FOR CHRONICALLY ILL ADOLESCENTS Mathilde Strating1 & AnneLoes van Staa1,2 1) Institute Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands 2) Expertise Centre Transitions of Care, Rotterdam University, the Netherlands [email protected]

Objective: Since there are only disease-specific naire that can be used in case the original version instruments available for measuring self efficacy is considered to be too long. in adolescents with a chronic disease, we aimed to develop and validate a new instrument applicable Results: The response rate was 36.1%. A total of to a variety of chronic diseases. 959 adolescents completed the self-efficacy -in struments. Confirmatory factor analyses revealed Methods: A cross-sectional study was conducted the expected three-factor structure and good fit in a Dutch university hospital, where all adoles- indices. Following the factor loadings, modifica- cents (12-19 years) with somatic chronic condition and fit indices item-reduction analysis was tions were invited to participate in a web-based performed to develop a short version of the sub- questionnaire. Based on existing disease specific scales. Cronbach´s alpha for the original subscales self efficacy instruments, explorative research into ranged from .77 to .88 and for the short subscales adolescents´ healthcare-related competencies in from .72 to .82 indicating good internal consist- 31 face-to-face interviews, and after preliminary ency. Correlations between the original subscales testing of the formulations and response catego- and short subscales were good, ranging from .89 ries, a final self-efficacy instrument was -con .90, indicating acceptable coverage of the sub- structed to measure three non-disease-specific dimensions. domains: (1) coping with the condition (8 items), (2) knowledge of the condition (10 items), and (3) Conclusion: The psychometric properties of the skills for independent hospital visits (11 items). self-efficacy scales were satisfactory, rendering Adolescents rated their self-efficacy on a 4-point the On Your Own Feet Self-Efficacy Scale a valid Likert scale. The instrument was tested by means and reliable instrument for assessing self-efficacy of structural equation modelling, examining its within adolescents with chronic conditions. validity and reliability. Additional analysis was done to develop a short version of the question-

POSTER ABSTRACTS 52 7

COMMUNICATING WITH YOUNG PATIENTS - STAFF TRAINING IN A TERTIARY HOSPITAL SETTING Boisen KA, Hertz PG, Blix C, Teilmann G Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Denmark

Introduction: There has been no formal staff before the course, while 13,8% were only con- training in adolescent medicine in Denmark. fident to a lesser extent. After the course 23,4% The aim of this study was to evaluate the effect responded that they were highly confident, 74% of staff training in communication self-efficacy were confident to some extent and only 2,6% to and in knowledge of legal aspects of adolescent a lesser extent. medicine. Regarding legal rules only 2,5% responded that they knew the rules of confidentiality to a great Methods: We have developed a three hour extent before the course. After the course more ‘crash course’ in adolescent medicine based on than half of the participants responded that the principles of the EuTeach curriculum. The they knew the rules to a great extent. 12,5% course runs every month and includes a brief responded that they did not know the rules lesson of bio-psycho-social development, legal at all before the course, none after the course. rules (confidentiality and consent). The greater Regarding treatment consent, 7,4% vs 48,7% part of the course covers communicating with (before and after) knew the rules to a great young patients including practical exercises. extent. Participants in 2009/2010 (n=92) were asked to evaluate the course, as well as their confidence Conclusion and perspectives: Although there in communicating with young patients and might be great bias in participants´ evaluations, their knowledge on legal rules before and after we found a trend towards greater self-assesed attending the course. knowledge in legal rules as well as confidence in communicating with young patients after Results: We received pre- and/or post-course attending the course. We have not evaluated questionnaires from 80 staff members attend- whether the reported confidence and knowledge ing the course. Very few (3,8%) were highly con- was sustainable, which will be the focus of a future fident in communicating with young patients randomized study of the effect of staff training.

53 POSTER ABSTRACTS 8

TRANSITION IN ADOLESCENTS ACROSS DISEASE AND GENDER Jette Rolf Svanholm, Mette Spliid Ludvigsen, Hanne Aagaard [email protected]; [email protected]; [email protected]

Background: Despite a growing number of observations of consultations between adoles- studies on transition in adolescents, literature is cents and health care staff as well as individual scarce on longitudinal studies of experiences of semi-structured interviews with the adoles- transition in adolescents with congenial heart dis- cents. Participants are recruited from outpatient eases, chronic kidney diseases and cystic fibrosis. clinics at Aarhus University Hospital, Skejby, in Denmark. Ten adolescents at 14 years of age are Objective: To study experiences of transition from selected in each group. Follow-up is planned at child-centred health care to adult-centred health 15 and 17 years of age. Data will be analysed ac- care in adolescents with severe chronic diseases. cording to phenomenological hermeneutics as described by Ricoeur. A comparative approach Research questions: - What are the adoles- is employed to show central characteristics cents´ experiences of transition being in a across disease and gender. The study period is maturing and independence process and what from September 2010 to February 2015. is important to them? - What characterise their interaction with health Perspectives: It is expected that this study will care staff? create knowledge about the existential and in- - How is the communication between the ado- terpersonal challenges of adolescents in transi- lescents and health care staff as perceived by tion. the adolescents when focus is on their illness? These results will make health care staff aware and conscious of transition among adolescents Methods: In a qualitative study with a longi- and enable them to act accordingly and thus tudinal design we have completed a system- improve quality and support to this group of atic literature search on distinctive features of patients. adolescents with chronic diseases in transition. Empirical data will be generated from an ethnographic fieldwork including participant

POSTER ABSTRACTS 54 9

HEALTH-RELATED QUALITY OF LIFE AMONG OVERWEIGHT EARLY ADOLESCENTS IN TWELVE EUROPEAN COUNTRIES

Oya Ercan1, Mujgan Alikasifoglu1, Deniz Albayrak-Kaymak2, Ozan Bakis3, Carine Vereecken4, Veronica Ottova5, Ethem Erginoz1, Martina Baskova6, Ulrike Ravens- Sieberer5, Namanjeet Ahluwalia7, The Health Behavior in School-aged Children Study (HBSC) Obesity Writing Group and The HBSC Positive Health Focus Group. 1 Istanbul University, Turkey 2 Bogazici University, Turkey 3 Galatasaray University Economic Research Center (GIAM),Turkey 4 Ghent University, The Research Foundation Flanders, Belgium, 5 University Medical Center Hamburg, Germany 6 Commenius University, Slovakia 7 University of Paris-13, France [email protected]

The effect of being overweight on health related Overweight adolescents had significantly lower quality of life (HRQOL) in 34322 early adoles- HRQOL than both normal and underweight cents aged 11 and 13 from twelve European peers (p=0,000). HRQOL was affected by age, countries was examined in this study. family affluence and being overweight across The data presented in this study were collected countries and within a country . A significant in 12 countries (Austria, Belgium, Bulgaria, interaction between age and gender was also Germany, Greenland, Luxembourg, Portugal, noted. The effect of both being 13 years old and Russian Federation, Slovenia, Spain, Switzerland, being a girl on HRQOL varied across countries. and United Kingdom) as a part of the HBSC However, the effects of family affluence and be- 2005/2006 study. Health related quality of life ing overweight on HRQOL were uniform across was determined using the KIDSCREEN-10 index. countries. Overweight included both preobese and obese These results suggest that professionals must adolescents. Of 47 779 students who were eligi- pay particular attention to overweight early ble for the present study, only the students who (13 years old) adolescents, particularly females. reported information on age (n=47 779, 100%), These adolescents are likely to have low HRQOL. gender (n=47 779, 100%), weight, (n=41211, Programs aimed at reducing obesity may be 86,3%), family affluence (n=45717, 95,7%), KID- recommended to consider addressing issues SCREEN-10 (n=44938, 94,1%) and body mass related to psychosocial functioning. index (BMI) (n=37496, 78,5%) were included for the present study (n= 34 322).

55 POSTER ABSTRACTS 10

LONG-TERM OUTCOME IN ADOLESCENTS AND YOUNG ADULTS WITH CONGENITAL HEART DISEASE

Schrøder M1, Teilmann G1, Boisen KA1, Reimers J2 1) Center of Adolescent Medicine 2) Center of Pediatric Cardiology, Department of Paediatrics and Adolescent Medicine University Hospital Copenhagen Rigshospitalet

Background: Due to treatment advances more than found no correlation between CHD-type/severity and 85% of children with congenital heart disease (CHD) psychological outcomes. Generally, regarding sexual- now survive into adulthood. This review focuses on ity and reproduction CHD patients were comparable long-term quality of life, psycho-social and socio- to the background population regarding age at first economic outcome for adolescents and young adults sexual intercourse, risky sexual behavior and rate of with CHD. offspring. Two studies found that adult CHD-patients reported a subjective sexual perception and function Methods: A systematic literature search was conducted similar to both partners and controls. However, three via PubMed. Data from 34 relevant articles are included other studies found that CHD-patients reported more ‘distress’ during sexual activity, that 10% experienced Results: Concerning quality of life (QOL), we found a increased cardiac symptoms during sexual activity positive tendency; three European studies found that and that 10% had lower body- and self- esteem com- QOL in CHD-patients was ‘good or better’ compared pared to controls. Three studies didn´t demonstrate to healthy controls in all domains of QOL. Three other correlation between CHD-type/severity and sexual studies found that CHD-patients had the same or bet- function but one study found a correlation between ter scores in mental and social domains compared to lower functional class and sexual problems. healthy controls, but scored lower (=worse) in physical Regarding education, studies from Finland, Sweden domains. Three studies found a correlation between and Holland found the same educational level for CHD-type/severity and QOL while three other studies CHD patients as the background population. The did not. Finally, there seems to be an interesting – and vast majority of studies reported employment rates positive – development over time since CDH-children in CHD-patients comparable to the background frequently report poorer QOL whereas CHD-adults population. report better QOL. The overall impression from the Conclusion: The studies included generally found reviewed studies is that the psychological and emo- positive results in long-term outcomes suggesting tional functioning in young adult with CHD is good that adolescent and young adult CHD-patients have compared to background population. Three studies good and meaningful lives.

POSTER ABSTRACTS 56 11

HPV VIRUS VACCINATION AMONG GREEK ADOLESCENT GIRLS: COVERAGE AND AWARENESS STATUS

Artemis Tsitsika1, Eleni Tzavela1, Fotini Mavromati,1 Erini Sakou1, Vassiliki Dimitrakopoulou1, Georgios Antonogiorgos1, Dimitrios Kafetzis1 1) Adolescent Health Unit (A.H.U.), Second Dpt of Pediatrics- P & A Kyriakou Children’s Hospital, University of Athens, Greece [email protected]

Introduction: HPV vaccination has officially Vaccinated girls had significantly more knowl- been in the guidelines for girls over 12 years in edge on the virus infection and relevant health Greece, since 2008. However vaccination cover- effects (p<.001); 90% of the girls were aware age remains low. The knowledge and percep- that the vaccine is available. Half of them were in- tions of the target group are important for future formed by their family, while 27% were informed outcomes. by their pediatrician. Girls that were informed by their pediatrician had a 2.67 better chance to be Aim of study: Estimation of HPV vaccination vaccinated versus those who were not informed coverage and research of knowledge and percep- (CI95%=1.64-4.35). Two thirds of participants tions of adolescent girls in Athens. (67%) were not aware that there is a association between HPV infection and cervical cancer, while Material and methods: A cross-sectional study 27.4% reported that they had this knowledge. was conducted in Athens among adolescent However, this piece of information did not signifi- girls in 9th and 10th grades during the academic cantly influence vaccination status (CI95%=0.12- year 2009-2010. 1.65). The study population included 470 adolescents (mean age: 14.85 years). A focused questionnaire Conclusion: Only one in five adolescent girls in was used to access perceptions and knowledge. Athens has been vaccinated against HPV . Rel- evant knowledge and having the pediatrician as Results: HPV vaccination coverage in adolescent information source seems to influence positively girls in Athens was estimated at 18.3% with a the vaccination status of target population. mean vaccination age 14.03 years (± 0.79).

57 POSTER ABSTRACTS 12

HPV VACCINATION AMONG GREEK ADOLESCENTS: AN EXPLORATION OF PARENTAL ATTITUDES AND FACTORS AFFECTING VACCINATION PRACTICE

Artemis Tsitsika1, Foteini Mavromati1, Eleni Tzavela1, Eirini Sakou1, Vasiliki Dimitrakopoulou1, Artemis Nomi- dou1, Mariza Tsolia2, Vana Papaevangelou2, Dimitrios Kafetzis2 1) Adolescent Health Unit (A.H.U.), Second Dpt of Pediatrics “P & A Kyriakou” 2) 2nd Pediatric Department of the University of Athens, Children´s Hospital “P & A Kyriakou” Children’s Hospital, University of Athens, Greece [email protected] Introduction: The uptake of the human papil- mation (10%). The intention to vaccinate in lomavirus (HPV) vaccine in Greece is very low, the future was reported by 65% of parents. while in other European countries increased Interviews´ content analysis revealed that the acceptance of the vaccine has been observed. decision to vaccinate is a process of concern, Aim: Exploration of parental attitudes about ambivalence, personal effort and expectation HPV vaccination and of the decision-making for more information. The decision to vac- process. cinate is facilitated through trusting specialists´ medical opinions, and through a family Method: The parents of 76 outpatient visi- history of cancer or HPV-infection. Finally, a tors volunteered to participate and filled out delay in vaccinating was observed and this questionnaires. Additionally, 21 parents par- was related to the fear for side effects, and the ticipated in structured one-to-one interviews. need for consistency of medical opinions. A Interviews transcripts were qualitatively ana- difficulty of parents to accept their daughters´ lyzed with content analysis. developmental transition was revealed.

Results: The majority of parents knew of the Conclusion: The results of the present study HPV virus (84%) and cervical cancer (96%), did not reveal negative attitudes on HPV while only half were aware of their associa- vaccination but rather ambivalence for, and tion. Of respondents, 26% had already vac- delay. These findings underline the need for cinated their daughters. For parents who had more consistent information about HPV vacci- not vaccinated, the most commonly reason nation, with a special emphasis on the asso- was side effects fear (58%) and lack of infor- ciation between cervical cancer and HPV.

POSTER ABSTRACTS 58 13

BONE MINERAL DENSITY AND ITS CORRELATION WITH SEX HORMONES IN GREEK HEALTHY MALE ADOLESCENTS Papaefthymiou M, Bacopoulou F, Zoumakis E, Bakoula C, Chrousos GP Center for Adolescent Medicine (CAM), 1st Department of Pediatrics, University of Athens, ‘Aghia Sophia’ Children’s Hospital, Athens, Greece.

Objectives: The initiation of puberty is accom- lems. Anthropometric measurements and Tan- panied by increases in sex hormones. The bone ner staging of pubertal status were performed. production during adolescence is enhanced The SPSS 16 program for statistical analysis and due to the anabolic influence of sex hormones Pearson’s correlation to determine associations and the increase of muscle strength. The ef- were used. fects of sex hormones on bone mineral accrual are mediated mainly by growth hormone and Results: Participants had mean (±SD) BMI insulin-like growth factor-1 (IGF-1). The aim of 25.5±5.6, z-scores of s-BMD 0.98±0.18 and hor- this ongoing study is to measure bone mineral monal mean (±SD) levels of 333.9±158.3 ng/mL, density (BMD) and evaluate its relationship to 3.6±2.2 mIU/mL and 3.5±2.6 mIU/mL for IGF-1, luteinizing hormone (LH), follicle-stimulating FSH and LH respectively. BMD correlated posi- hormone (FSH) and IGF-1 in order to assess their tively and strongly with IGF-1 (p=0.001) and LH role in changing bone mass in healthy Greek (p<0.0001) and also correlated positively with male adolescents. FSH (p=0.018).

Methods: A total of 46 Greek adolescent boys Conclusions: Preliminary results of this ongoing aged 11-17 years (mean 13.7±1.9 years) that prospective study showed that IGF-1, FSH and attended the Center for Adolescent Medicine LH levels were associated with BMD changes during a two year period (2008-2010) and and may play an important role in bone mass provided informed consent, have been enrolled regulation. Evaluation of these parameters could in the study. The s-BMDs of the lumbar spine help identifying otherwise healthy male adoles- (L1-L4) were measured by dual-energy X-ray cents at risk of underachievement in bone mass. absorptiometry, while LH, FSH and IGF-1 levels were measured in serum. All participants were healthy with no medical or mental health prob-

59 POSTER ABSTRACTS 14

SOMETIMES IT´S CANCER

Sam Smith and Lorraine Case [email protected]

Objectives: Cancer is the most common cause Results: The education pack has been delivered of non-accidental death in teenagers and young in over 280 schools in the Northwest of England. adults (TYA), however delayed diagnosis is com- Evaluation and feedback has been analyzed and mon in this population. TYA´s are not educated the DVD/ Education pack have been modified. within schools about classic symptoms and Sometimes Its Cancer is an age appropriate do not recognise important signs of teenage resource, which encourages young people to cancers. Previous health campaigns have been recognise classic symptoms. The local project successful in influencing early help-seeking was presented to the Department of Health and behaviour in cancer patients. The “Christie Crew” was approved for national roll out. is a TYA Service User Group who wanted to educate young people in the common signs Conclusion: Raising awareness of common and symptoms of teenage cancers to improve cancer symptoms is an urgent priority in this early help-seeking behaviour in young people age group. Sometimes Its Cancer is now be- in order to contribute to a more timely diagnosis ing implemented and is part of wider national of cancer. research study to examine whether a change in young peoples knowledge and behaviour Methods: The group have produced a 10 occurs following the implementation of the pro- minute cancer DVD and education pac to be gramme. Sometimes Its Cancer is an example of used in schools which has been piloted and how working in partnership with young people evaluated. The DVD is age appropriate for can result in national success and influence those aged 11-18 years and highlights individ- changes in healthcare and health promotion. ual stories regarding the signs, symptoms and experiences of diagnosis. A poster campaign has also been developed by the young people to raise awareness in the wider community.

POSTER ABSTRACTS 60 15

PROMOTING HEALTH LITERACY AND BEHAVIOR IN ADOLESCENT ATHLETES: A PILOT STUDY

Meng-Che Tsai, Yen-Yin Chou, Shio-Jean Lin Department of Pediatrics, National Cheng Kung University Hospital, Tainan, Taiwan [email protected] Objectives: Adolescent athletes thought to be post-intervention time points. The questionnaires healthier than other teenagers are however more were reported on a 5-point scale and analyzed vulnerable to sports injury and overlook their un- with Student t test, Mann-Whitney U test and healthy behaviors. Enhancing their self-care ability Wilcoxon signed-rank analysis. can prevent diseases and promote health. This pilot study aimed to investigate health behaviors Results: Adolescent athletes showed different of adolescent athletes and evaluate the effective- health behaviors from that of other students by ness of extracurricular health-promoting activities. higher scores in exercise but lower scores in nutrition among the AHP scale items. After participat- Methods: This pilot study was a quasi-exper- ing in the health promotion club, the intervention iment. For the intervention group, 20 athlete group had significantly higher scores on health students enrolled voluntarily in the health pro- knowledge than the control group. The difference motion club. For the control group, 20 athlete of perceived health status and AHP scales between students from the other extracurricular clubs were the two groups was not as significant. Improve- recruited. All participants were trained for com- ment of health responsibility, such as searching for petitive sports at least for 3 years. The intervention health information and choosing foods without consisted of a 20-week education program. Selec- additives, was noted across intervention. tion of health issues was initiated by the students and focused on puberty, nutrition, reproductive Conclusions: Athlete students well appreciated health, and sports medicine. Health behaviors the school-based health promotion program. were compared between adolescent athletes and They gained better health knowledge and culti- published normative adolescents with the Ado- vated healthier behaviors through the activities. lescent Health Promotion (AHP) scale. Measure- Further studies of larger participation over an ex- ment of effectiveness, which included perceived tended period of time are encouraged to evaluate health status, health knowledge, and health the effectiveness of implementation. behaviors, took place at pre-intervention and

61 POSTER ABSTRACTS 16

YOUNG EDITORS (UNGEREDAKTIONEN)

Berit Nørgaard [email protected]

The art project UngeRedaktionen has been bed, while waiting, when one is bored or sad, running at Copenhagen University Hospital alone, together and in a million other ways. Rigshospitalet since 2006. UngeRedaktionen Drawing is a meditative, demanding, useful invite young patients aged 12-18 to contrib- and fun way of being in the world. ute with texts and illustrations to a magazine The concept of UngeRedaktionen is devel- for young people. Common to all contribu- oped by artist Berit Nørgaard and performed tors is that they have been hospitalized with in collaboration with the young patients at serious and/or chronic diseases. UngeRedak- the hospital. tionen is unable to relieve the young patients Please visit www.beritnoergaard.dk for further of their physical problems, but the project information. contributes as a mental space with room for other parts of life. The aim is to inspire the young contributors to regain the voice they in the role as patients, may have shelved. Each contribution made is potential joy and inspiration for both the author and the young readers at the hospital. The magazine underlines the possibility of maintaining ones dreams and hopes in a difficult situation - and to stay true to one self. In spring 2011, UngeRedaktion has extended to a Mobile Drawing School. The Drawing School offers qualified drawing sessions as drawing is a skill that can be developed in

POSTER ABSTRACTS 62 17

PEERS HELP PEERS

Violetta Shastina [email protected]

The key focus of “Rovesnik – rovesnik” (Peer- main areas is our work in orphanages, boarding to-peer) movement (Russia, St-Petersburg City schools and vocational technical schools, aimed Center for Drug Abuse Prevention NGO) is self- at developing health lifestyle skills among teen- development and self-actualization of a person, agers, motivating them to safe behavior and building harmonious relations with oneself and increased use of reproductive health services. the world around, that helps to form a negative That´s why collaboration with Youth Friendly attitude to alcohol, drugs, and relevant harmful Clinics is very important for us. Working with practices and to prevent these risky behaviors adolescents from orphanages, boarding schools both in one´s life and in life of peers. and vocational technical schools it´s not only “Rovesnik´s are young people from 13 to important to inform our peers about availability 29 years old. The main prerequisite to join of youth clinics, but sometimes it´s necessary “Rovesnik” is a strong disapproval of drugs and to “take the hand” and bring a teenager to the readiness to promote healthy life styles. clinic. There is an annual program for training new volunteers for “Rovesnik”, including training on basic components (personal development, Discovery course, drug abuse prevention, alcohol abuse prevention, HIV /AIDS, STI, tolerance, high-risky behavior prevention) and training for trainers. We follow a differentiated approach in preventive work with different target groups, based on initial assessment of characteristics, internal needs and external resources of adolescents. We have different working segments. One of the

63 POSTER ABSTRACTS 18

VOLUNTEERS IN HR. BERG - A SPECIAL PLACE FOR YOUNG PEOPLE ONLY

Frederiksen FM and Blix C Red Cross Youth, Denmark and Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Denmark

Background and aim: Hospitalized young Furthermore the volunteers are offered super- people (YP) at Rigshospitalet are scattered all vision every second month. over the hospital, often isolated, and need to get in contact with other YP. Center of Adoles- Results: Today, 40 volunteers make sure that cent Medicine established a café (Café Hr. Berg) Hr. Berg is open Sunday – Thursday at 6.30 – for YP in 2009. Hr. Berg tries to break with the 9.00 pm. All activities are on the terms of the isolation by offering the YP a place where they young people who are visiting Hr. Berg. The can meet and share experiences with other volunteers plan all sorts of activities, for exam- YP in similar situations. Initially, the staff from ple movie nights, table football, table tennis Center of Adolescent Medicine was running or a trip to the nearest park. There are monthly the place during the day, but the need for pro- “special nights” where entertainers e.g. come- longed opening hours was obvious. Therefore, dians, musicians or celebrities are invited. The we aimed to establish a corps of volunteers in volunteers in Café Hr. Berg received a reward, collaboration with Red Cross Youth, Denmark Frivillig Prisen 2010, from Red Cross Youth. to ensure youth friendly opening hours. Discussion and conclusion: Challenges for Methods: In spring 2010, a coordinator and 40 the volunteers include prevention of volun- volunteers aged 23 to 35 were recruited and teers dropping out and ensuring continuous organized through Red Cross Youth. A two-day supervision in difficult cases, e.g. when a young training programme was organized in col- user of Hr. Berg dies. The use of volunteers is laboration with Center of Adolescent Medicine. new in Danish hospitals and shows promising The programme included subjects such as results. Currently, the concept is being devel- hygiene, patient confidentiality and commu- oped in other large hospitals in Denmark. nication with young people. Volunteers were also offered fire training and a first aid course.

POSTER ABSTRACTS 64 19

PSYCHOSOCIAL FUNCTIONING AND HABITS OF ADOLESCENTS WITH EATING DISORDERS

Artemis Tsitsika1, Eleni Tzavela1, Dimitrios Kafetzis1 1) Adolescent Health Unit (A.H.U.), Second Dpt of Pediatrics-”P & A Kyriakou” Children’s Hospital, University of Athens, Greece

Introduction: Eating disorders (ED) in adoles- lent performance (GPA>=18/20), 32% good cence have been associated with psychosocial performance (GPA=15-18/20), while only 17% difficulties. In Greece the topic has not been reported GPA<15/20. Excellent school perfor- adequately studied. mance was more common among adolescents with AN Method: 180 adolescents with EDs, who were than among those with BN or EDNOS (p <0.05). outpatients in an adolescent unit, participated The mean anxiety level was 7.24 (± 2.33) on a in this study. Participants were aged 11-19 years; self-reporting scale 1-10, with a tendency to- 164 were girls and 16 boys. The ED subtype wards higher levels of anxiety among BN cases diagnosis was based on DSM-IV criteria after (p=0.067). Of participants, 66% had body-relat- a clinical interview: 67 adolescents (40%) met ed hobbies (sports, dance) while 11% criteria for anorexia nervosa (AN), 23 (13.7%) > had no hobbies. Habits: 14% of adolescents for bulimia nervosa (BN), while 78 (46.5%) well were smokers and 9.4% consumed alcoholic classified as Eating disorders-not-otherwise- beverages, while 18.4% were sexually active specified (EDNOS). (EDNOS> BN> AN, p=0.002).

Results: 16% of participants reported no close Conclusions: It is suggested that young people dyadic friends, which is significantly higher with EDs have very good school performance, than the respective national figure (1.7%; HBSC, but often report difficulties in dyadic friend- 2008). A significant association was revealed ships, and experience high levels of anxiety. between having no close friends and type of These > characteristics may affect negatively ED, with 73.7% of AN, 15.8% of BN, and 10.5% of their development and clinical outcome, and EDNOS reporting no dyadic friends. In regards should be intervened upon as part of their ED to school performance 51% self-reported excel- treatment.

65 POSTER ABSTRACTS 20

IS “HEADS” IN OUR HEADS?

Boisen KA, Hertz PG, Blix C, Teilmann G Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Denmark

Introduction: Independent visits are an impor- responded that they had never had independent tant part of transitional care for young patients visits. and the HEADS acronym is considered a work- We found substantial differences between staff able and sensitive way of screening young pa- and young patients regarding how often sensi- tients´ psycho-social life including possible risky tive subjects were addressed at the clinic visits. behavior. The aim of this study was to explore to While 33% of staff members stated that they which extent young patients and staff report the always/often address smoking only 10% of the use of independent visits and discussion of sensi- young patients responded that smoking always/ tive issues included in the HEADS model. often was addressed. Regarding alcohol, the equivalent numbers was 33% vs. 7% and for il- Methods: We conducted a questionnaire survey legal drugs 13% vs. 4%. The same trend was seen among young patients and staff at the outpatient regarding sexuality with 16% of staff members clinics at the Copenhagen University Hospital stating always/often addressing sexuality and Rigshospitalet (RH). 17% contraception, while only 7% and 4% of young patients responded that these subjects Results: 292 young patients (12-22y) responded always/often were addressed. with 47% being followed at one of the pediatric departments. 98 staff members responded, 31% Conclusions: Staff found independent visits from pediatric departments. for young patients important. However, young 73,6% of the staff found it important that young patients do not experience this opportunity rou- patients meet physicians and nurses alone with- tinely. HEADS subjects are not routinely included out their parents. However, 61% of the patients in the clinical visits although staff members rate responded that they only seldom or never have psychosocial screening important. Excellent ado- independent visits. Although age had a signifi- lescent patient care including independent visits cant effect on the rate, 17,7% of the 20-22 year and psycho-social screening demands focus, old and 27,6% of the 18-19 year old patients training and resources.

POSTER ABSTRACTS 66 21

DISORDERED EATING IN YOUNG PEOPLE WITH TYPE 1 DIABETES Victoria Young1,2, Barbara Johnson1,2, Samantha Brierley1,2, Kinga Lowrie1, Rebekah Ford1, Kay Bottrell1, Vanessa Whitehead1, Christine Eiser1,2, Simon Heller1,3 1) NIHR CLAHRC for South Yorkshire, UK 2) Child and Family Research Group, Department of Psychology, University of Sheffield, Sheffield, S10 2TP, UK 3) Academic Unit of Diabetes, Endocrinology and Metabolism, School of Medicine and Biomedical Sciences, Beech Hill Road, Sheffield, S10 2RX, UK [email protected]

Background: Young people with type 1 dia- Results: One third (33.3%) of the cohort scored betes are considered to be at particular risk for above the suggested threshold for the DEPS-r disordered eating. Attention to diet (required indicative of disordered eating. Of those who for diabetes-management) and increased BMI scored over the threshold, 11.5% reported some (associated with insulin treatment) are both risk form of insulin manipulation. factors for eating disorders. In addition, insulin omission offers an easy means of weight loss. Conclusions: Disordered eating behaviour is Studies of disordered eating behaviour in young problematic in young people with type 1 dia- people with type 1 diabetes have typically relied betes. Diabetes services for young people need on generic measures of disordered eating that to be aware of disordered eating and staff must are likely to distort prevalence. feel confident in discussing eating problems with young people. We argue for further development Objectives: To establish the prevalence of dis- of ordered eating behaviour in a cohort of young diabetes-specific measures of disordered eating people with type 1 diabetes. behaviour.

Methods: As part of a wider project young [This abstract presents independent research commis- people ((n = 78) : aged 15-21years) were recruited sioned by the National Institute for Health Research (NIHR). from two young people´s transition clinics in The views expressed in this abstract are those of the au- Sheffield. Individuals completed the Diabetes thors and not necessarily those of the NHS, the NIHR or the Eating Problems scale revised (DEPS-r), a validat- Department of Health] ed tool for the measurement of disordered eating in populations with diabetes.

67 POSTER ABSTRACTS 22

DEPRESSION AND DIABETES DISTRESS IN YOUNG PEOPLE WITH TYPE 1 DIABETES Samantha Brierley, Christine Eiser, Barbara Johnson, Victoria Young, Kinga Lowrie, Rebekah Ford, Kay Bot- trell, Vanessa Whitehead, Simon Heller. NIHR CLAHRC for South Yorkshire, UK [email protected]

Background and objective: The incidence of Results: 28% of the sample reported border- depression is higher among adults with type line abnormal and above levels of anxiety, 1 diabetes than in the general population, yet with 11% reporting abnormal levels of anxi- evidence for this relationship in young people ety, 8% reported borderline and above levels (YP) is contradictory. Additionally, a series of of depression. Using the DDS17, 16% reached reports have highlighted that at least in type 2 levels of distress worthy of clinical attention. diabetes, diabetes related distress rather than Additional items relating to long-term compli- depression contributes to poor glycaemic cations and family pressures from the full DDS control. Previous studies have not measured proved problematic for the YP and correlated this in YP. This study aims to determine the highly with anxiety (.633, p<0.05). prevalence of depression and diabetes related distress in YP with type 1 diabetes. Conclusions: Psychological symptoms are more prevalent in the YP with T1D than in the Methods: YP were recruited from two YP dia- general population. Health care professionals betes clinics in Sheffield (N=74). Participants must be aware of this and future interventions were asked to complete both the Hospital must focus on the alleviation and prevention Anxiety and Depression Scale (HADS), and the of such symptoms. Additionally, given the Diabetes Distress Scale (DDS). Both the vali- relationship between items included in the dated shortened scale (DDS17) and the full 28 full DDS and anxiety, the full DDS and not the items of the DDS were used in analyses given DDS17 should be included in the measure- its lack of validation in the young population. ment of diabetes related distress in YP.

POSTER ABSTRACTS 68 23

INTERNATIONAL PARTNERSHIPS IN THE FIELD OF ADOLESCENT HEALTH RESEARCH AND TRAINING: DEVELOPMENT OF YOUTH FRIENDLY FAMILY MEDICINE PRACTICES IN BOSNIA AND HERZEGOVINA Anne Meynard1, Daliborka Pejic2, Ana Sredic2, Senad Huseinagic3, Françoise Narring1, Lena Sanci4, Dagmar Haller1,4 1) Youth Clinic, Adolescent and Young Adult Program, Department of Pediatrics and Department of Community Medicine and Primary Care, Geneva University Hospitals, Switzerland, 2 ) Fondacija fami, Bosnia & Herzegovina 3) Public Health Institute, Zenica, Bosnia & Herze- govina , 4) Department of General Practice, The University of Melbourne, Australia [email protected]

Purpose: To describe a successful international validated as continuous education for doctors and partnership which aims to improve young people´s nurses. access to youth-friendly healthcare in a ressource limited country. Through collaboration between Results: Support from local authorities contributes coordinators in Bosnia and Herzegovina, local family to the success of this partnership. 68 family doctors practices and Geneva university hospitals, supported and nurses participated. Interactive training allowed by the Swiss Development and Cooperation agency, exchanges among participants in their language. De- various youth-friendly activities were introduced in spite the language barrier, adherence to the training family practices in Bosnia and Herzegovina. A cluster protocol was high (except in role plays). Assignments randomized controlled trial (CRT) was conducted to and oral presentations led to improved interprofes- test the effectiveness of these activities in improving sional collaboration. youth-friendliness of the practices. Conclusions: Ongoing health reforms and recon- Methods: Collaboration between Adolescent Health struction of an effective primary care system is an specialists in Geneva and a well established local excellent opportunity to promote youth friendly team (coordinators, health care professionals, politi- activities in Bosnia and Herzegovina. Ongoing sup- cians) was achieved. Local youth participated in every port for the international partnership, participation of step of the project. A multimodal intervention was local key stakeholders, large number of family medi- designed by Swiss experts based on WHO orienta- cine teams participating and two main coordinators tion program, Euteach and Australian guidelines of the project attending Euteach summer school will consisting of 2 days training in February and May contribute to further developments and sustainability 2010, personal and group assignments (self reflection of youth friendly activities at the end of this project. sheets, assessment of local networking opportunities)

69 POSTER ABSTRACTS 24

SIGNIFICANT DIFFERENCES IN PATIENT-PERCEIVED QUALITY BETWEEN YOUNG PEOPLE AND THEIR PARENTS

Teilmann G1, Rimdal B2, Boisen KA1 1) Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Denmark 2) Unit of Patient-Perceived Quality, The Capital Region of Denmark, Denmark

Background: There is increased focus on patient per- to PA. YP experienced that doctors and nurses had “time ceived experiences and satisfaction as basis for quality enough for the individual patient” to a lesser extent indicators in the health sector. When young patients than PA. More YP were in doubt about the effect of their participate in surveys of patient experiences the ques- lifestyle compared to PA. YP were more in doubt about tionnaires might be filled in by young people themselves, where to go in case of changes in their condition be- by their parents or in collaboration. There is limited under- tween visits and other questions compared to PA. How- standing of the effect of this. ever, there was no difference in the overall impression of the visit in the out-patient clinic and in the experience of Aim: To analyse if user reported experiences and satisfac- the physical environment between YP and PA. There was tion differed depending on whether Young Patients (YP) no difference in how YP and PA felt that questions were or parents/relatives (PA) had filled in the questionnaire. answered or in understanding of current medication, Method: Data were collected by the Unit of Patient- though 22% PA and 24% YP were in doubt about current Perceived Quality as a part of the Danish National Survey medication. of Patient Experiences 2010. We included data for young Discussion and conclusion: Patient-Perceived Quality patients aged 12-20 years seen in out-patient clinics differed significantly in several questions depending on in hospitals in the Capital Region and Region Zealand whether YP or PA had filled in the questionnaire. However (N=491). We compared results from questionnaires filled this study did not compare pairs of YP and their respec- in by Young Patients (YP, N=324) or Parents/relatives (PA, tive parent/relative, which may explain some of the N=167). Selected questions are presented. observed differences. However, this study underlines the Statistics: Chi-square test was used to compare YP and PA, importance of asking young people directly if we aim to and significance level was set to 5 percent. evaluate their level of satisfaction with health services. Results: We found significant differences between -an swers from YP and PA in several fields: YP considered waiting time less acceptable compared

POSTER ABSTRACTS 70 25

EVOLUTION OF A HOSPITAL-BASED YOUTH SERVICE Donna Hilton [email protected]

Objectives: Youth workers work predominantly support, group work, peer activities, day trips in the community with young people between and residentials, educational projects, par- 11 and 25 years with the main aim of develop- ticipation work and transition programmes. ing their personal and social development via Developments have included a Youth Forum, a wide range of informal educational opportu- Hospital Youth Club, Sibling Support, Patient nities. However, hospital-based youth work is Volunteer Scheme and a Transition Residential still under-researched, developed and funded Programme. regardless of many documents, reports and policies from health professionals stressing the Findings: Young people involved in hospital importance of this work. youth work have experienced many positive outcomes such as increased self-esteem; con- The paediatric nephrology unit at Nottingham trol and management over medical condition; City Hospital successfully evaluated the role of new opportunities; development of new skills; a youth worker in the year 2000, and long-term greater relationships with peers; families and funding for the post was secured. A decade medical staff; smoother transition into adult- along, and still going strongly at Nottingham hood; accreditation and qualifications. University Hospitals, this paper describes the evolution of a hospital-based youth service and Conclusion: Youth Work should be a key part in the outcomes it generates for young people af- any young person´s life; why should young peo- fected by chronic health conditions. ple in hospital miss out? We hope that based on the success of NUH Youth Service, more hospi- Methods: NUH Youth Service delivers work in tals will invest in young people´s well-being by a wide range of methods that are appropriate adopting youth workers into their teams. to young people´s needs and interests, under the key aims of Support, Empowerment and Opportunity. This could include one-to-one

71 POSTER ABSTRACTS 26

YOUTH AMBASSADORS: A NETWORK OF TRAINED NURSES Hertz P, Meinike D, Blix C Center of Adolescent Medicine Copenhagen University Hospital Rigshospitalet, Denmark

Background: The group of chronically ill young peo- Results: 23 nurses from 21 wards and out patient ple (YP) is increasing and at Rigshospitalet adoles- clinics completed the programme. cent patients are admitted at either pediatric or adult The participants evaluated all modules on a scale wards. This leads to a low number of YP at each ward from 1 to 5 as well as the appropriateness of the con- and difficulties in obtaining routine in adolescent tent in relation to their clinical practice. All modules care for staff members. There is no formal training in rated 4 or 5. In the overall evaluation particpants adolescent medicine and health care in the Danish noted the relevance of the selected themes and the nurses´ curriculum. desire for more time for development projects. At the end of the programme each Youth Ambas- Aim: To establish a network of nurses (Youth Ambas- sador received a badge contributing to the visibility sadors (YA)) with special skills, knowledge and inter- of YAs at the hospital. During the autumn 2011 the est in working with and developing nursing care and YAs will develop and implement their youth friendly rehabilitation for young patients. development projects and continue networking.

Methods: In cooperation with the relevant ward Discussion and conclusions: The challenge will now managements (n=21), Center of Adolescent Medi- be to continue developing and maintaining nursing cine (CAM) developed a training programme run- competencies as well as defining and qualifying the ning from January 2011 to May 2011. function as YA. To implement the YAs´ special status The programme consisted of 8 full day modules in the departments requires organizational reflection including 5 elements: and support from the management. 1. Lectures and discussion of themes related to YP It is the task of the networking group, department 2. Training in communicating with YP management and CAM to support the YA’s to main- 3. YA presenting different themes from the modules tain the youth-oriented focus in strong competition at their local ward with many other important themes and tasks in the 4. Preparation of a youth friendly development pro- departments. ject at their local ward 5. Creating an active network for YAs

POSTER ABSTRACTS 72 Badminton match in the hospital garden 73 SPEAKERS PARTICIPANTS &

Badminton match in the hospital garden 74 VALENTINA BALTAG

Valentina Baltag works in the WHO Regional Office for She worked in several countries in economic transition Europe, in the Division of Noncommunicable Diseases in the WHO European region including central Asia. In and Health Promotion, programme of Child and her current position she focuses on technical support Adolescent Health. She is responsible for programme in developing and implementing policies, strategies development and countries’ support in the area of and tools to strengthen governments’ response to primary care and family and community health, with adolescent health and development needs, and specific focus on adolescent health. After a career in capacity to deliver age-appropriate services. clinical practice and clinical research, she specialized in health systems management and public health issues in reproductive, maternal, child and adolescent health.

DEBORAH CHRISTIE

Dr Deborah Christie is a Consultant Clinical searching for ways to live with chronic illness including Psychologist, Honorary Reader in paediatric and Diabetes, Obesity, Arthritis, Chronic Fatigue and adolescent psychology. She is clinical lead for Chronic Pain Syndromes. Current research interests paediatric and adolescent psychology at University include neuropsychological outcomes in children College London Hospitals NHS Foundation Trust. and adolescent survivors of meningitis, quality of life Her Ph.D was in neurobiology exploring the effects measures in chronic illness and the development of of early brain damage and recovery of function. She effective multidisciplinary interventions for diabetes received a Fulbright scholarship and studied at the and obesity in children and adolescents. Dr Christie NorthEastern Ohio Universities College of Medicine developed the Healthy Eating Lifestyle Programme teaching functional neuroanatomy and carrying out (HELP) as part of the University College Hospital Weight research on the anatomical substrates for conditioned Management Clinic. HELP has also been incorporated learning. As a Medical Research Council post doctoral into ‘Watch-It’ a community based programme in Fellow Dr Christie spent 3 years at Oxford University Leeds. In 2001 Dr Christie was awarded the Association before joining Great Ormond Street Hospital for Sick for the study of Obesity Best Practice award and the Children completing research into long term learning Society for Adolescent Medicine Diabetes award difficulties associated with treatment for cancer in in Adolescent Health. She received the award for children. Outstanding Scientific Achievement in Clinical Health She currently works with young people who are Psychology in 2004.

75 SPEAKERS´ PROFILES GEORGE P. CHROUSOS

George P. Chrousos is Professor and Chairman of the Dr. Chrousos has written over 600 original scientific First Department of Pediatrics at the University of papers and his work has been cited in more than Athens School of Medicine, Athens, Greece, and former 52,000 other scientific articles, an irrefutable testimony Chief of the Pediatric and Reproductive Endocrinology to the importance and influence of his research. He Branch of the National Institute of Child Health and is one of the most cited scientists internationally (ISI Human Development (NICHD), National Institutes of highly cited) both in Clinical Medicine and in Biology Health (NIH), Bethesda, Maryland. and Biochemistry and the highest cited clinical He also holds the UNESCO Chair on Adolescent Health endocrinologist and pediatrician in the world. Care since 2010 and the Kluge Distinguished Chair Dr. Chrousos has received numerous national and on Technology and Society, Library of Congress, international awards and has given many lectures in Washington DC, since 2011. the USA, Europe and Japan. Prof. Chrousos is internationally recognized for his He was inducted as a Master of both the American research on the glucocorticoid signaling system of College of Endocrinology and the American College of the cell, on the diseases of the hypothalamic-ituitary- Physicians. He is president of the European Society of adrenal axis, and on the physiological and molecular Clinical Investigation. mechanisms of stress. His contributions span a range He is an elected member of the Institute of Medicine, of medical disciplines, including Medicine, Pediatrics, The National Academies, Washington DC, USA, and the Endocrinology, Psychiatry, Rheumatology, Allergy, Academia Europaea, London, UK Surgery, Oncology and Reproductive Medicine.

PERNILLE DUE

Pernille Due’s main research interest is child and adolescent health, including topics as overweight, mental and physical symptoms, smoking, alcohol use, medicine use. She applies a social epidemiological perspective with a special focus on social inequality and contextual factors which influence health and health behaviours. She is the Principal Investigator of the Health Behaviour in School-aged Children in Denmark and Director of the Research Program for Child and Adolescent Health at the National Institute of Public Health, University of Southern Denmark.

SPEAKERS´ PROFILES 76 HELENA FONSECA

Helena Fonseca MD, MPH, PhD Paediatrician at Hospital de Santa Maria, University of Lisbon, Portugal. Associate Professor of the Department of Paediatrics. Head of the Adolescent Unit and of the Paediatric Obesity Clinic. MPH at the University of Minnesota. PhD at the University of Lisbon with a dissertation on Adolescent Obesity: “A contribution towards a better understanding of psychosocial factors associated with overweight and obesity”.

CHRISTIAN GRAUGAARD

Christian Graugaard is MD, PhD and currently a senior researcher at The University Library of Copenhagen. He is a lecturer at The Institute of Psychology (University of Copenhagen) and since 2003 chairman of The Danish Family Planning Association, “Sex & Samfund”. Further, he is editor-in-chief of the world’s oldest, still existing medical journal, “Bibliotek for Læger”, a quarterly magazine dedicated to the history, culture, philosophy and methodology of medicine. His primary fields of interest are sexuality and disease, adolescent sexuality and the history and sociology of body, gender and sex. He has published extensively on these subjects.

77 SPEAKERS´ PROFILES JENS-CHRISTIAN HOLM

MD, Paediatrician, Jens-Christian Holm is an Associate Earlier, Dr Holms PhD-study evaluated 115 children with Professor of the Department of Paediatrics at the 13 consecutive measurements during initial 3 months of Holbæk University Hospital under Copenhagen weight loss and 28 months of follow-up (weight regain) University and Head of the Children`s Obesity Clinic, in regards to concomitant changes in BMI SDS, leptin, which he has initiated and shaped into a 20+ personnel soluble leptin receptor, systolic and diastolic blood multidisciplinary clinic. The clinic treat obese children pressure SDS, hs-CRP, PAPP-A, and more. and youth with acceptable results and simultaneously Dr Holm is a member of the European Childhood investigate and treat the presence of associated Obesity Task Force under IASO as well as review boards. complications such as dyslipedimia, hypertension, Dr Holm received The Region Sealand Health Price 2009 diabetes, fatty liver disease, teasing, psychosocial – the largest health prize in Denmark and Professor Hans conditions and more. Several associated research Ibsens Price for hypertension research in 2010. studies have already been or are soon launched under Currently, Dr Holms research focus on childhood obesity the structure of the “The Danish Childhood Obesity treatment and associated developments in regards Biobank”, which Dr Holm also has initiated and currently to hypertension, fatty liver disease, endocrinology, lead. genetics, and metagenomics (META-Hit). These studies All data from The Children`s Obesity Clinic and the Danish are established in the context of The Danish Childhood Childhood Obesity Biobank are being computed into a Obesity Biobank, which aim to include 5000 children large multifaceted database, which has been developed and youths. in collaboration between Dr Holm and the Novo Nordisk Foundation Center for Basic Metabolic research.

BJØRN HOLSTEIN

Bjørn Holstein’s main research interest is child and adolescent health, including topics as mental and physical symptoms, risk behaviour, medicine use. He applies a social epidemiological perspective with a special focus on social inequality and contextual factors which influence health and health behaviours. He is Professor in Social Epidemiology at the National Institute of Public Health, University of Southern Denmark.

SPEAKERS´ PROFILES 78 TINNE LAURSEN & LOTTE ØRNEBORG RODKJÆR

Department of Infectious Diseases Aarhus University Hospital Tinne Laursen Skejby Sygehus HIV-counsellor,Psychotherapist,MPF DK-8200 Aarhus N Ph: +45 89 49 83 34 Denmark Mobile: +45 20 20 07 07 Primary fields of interest: E-mail: [email protected] Communication http://www.ungegruppen-dk.dk/ Patient-provider relationship Health promotion and prevention in relation Lotte Ørneborg Rodkjær to HIV Research Nurse MPH,PhD Coping with a chronic disease Ph.: +45 89 49 83 29 Research: Mobile: +45 22 30 80 60 HIV and children E-mail: [email protected] HIV and adolescents HIV and depression HIVand adherence HIV and partner notification HIV course for HIV-positives

JANET MCDONAGH

Senior Lecturer in Paediatric and Adolescent Paediatrics and Child health Special Interest Group for Rheumatology at the University of Birmingham Young People’s Health (www.yphsig.org.uk) Clinical Lead for Adolescent Health and Consultant Steering group member and co-chair of the Royal Rheumatologist at Birmingham Children’s Hospital NHS College of Physicians Strategy Group for the care of Foundation Trust. adolescents and young adults Clinically and research active with interests in Reference group member for national NHS Kidney Care adolescent health, chronic illness and transitional Supporting Young Adults Project (2010 - ) care. Themes of currently funded projects include Member of the National Transition Support transitional care for young people with liver Programme Reference Group 2009-2011 (www. transplants; transitional care for young young people transitionsupportprogramme.org.uk) with diabetes, cerebral palsy or autism; satisfaction of Author of the transition and chronic illness sessions young people and their parents in paediatric and adult in the RCPCH Adolescent Health e-learning Project specialty clinics; decision-making of young people with (http://e-lfh.org.uk/projects/ah/index.html) JIA starting biologic therapy; development of a web- Editor of “Adolescent Rheumatology” (2008) – a based resource for young people with chronic arthritis. textbook highlighting the generic aspects of adolescent health in rheumatology. Trustee of the Association for Young People’s Health (www.youngpeopleshealth.org.uk) [email protected] Steering Group Member of the Royal College

79 SPEAKERS´ PROFILES MARIE MCGEE

Marie is the Transition Care Co-ordinator for the She also has an extensive background with over 20 Rheumatology Team, Birmingham Children’s Hospital years experience working in primary schools across NHS Trust. She is one of a few in the UK who has inner city localities in Birmingham UK. She developed been specifically appointed to develop transitional and coordinated the mentoring strand across 15 care for young people with long term conditions. primary schools and her innovative approach was The role evolved from a post funded by the national recognised by gaining a Teaching Award which BUPA Clinical Excellence award received by the highlights excellence and encourages best practice. Adolescent Rheumatology team for the translation She also runs a Mentoring Consultancy providing of their transitional care research into clinical day to training and advice to professional and families day practice (http://www.bupafoundation.com/asp/ regarding a range of areas including developing family awards/win_hi_clinical.asp). Marie is now funded skills and community cohesion part time by a charity called the Childhood Arthritis Trust with a remit to support the existing adolescent rheumatology programme and also to facilitate the transfer of individual young people into one of the many adult rheumatology services in the region.

ANNE MEYNARD

I am adolescent health and family medicine specialist Since 2008, I am part of Euteach working group and at Geneva University hospitals’youth clinic. actively involved in the yearly summer school. After my medical studies in Switzerland I trained My main area of research is the development of in family medicine, worked in an HIV clinic and in training interventions in research projects, especially the community medicine department of Geneva’s the development of a adolescent simulated patient University hospital especially with migrant program in Geneva univesity hospital, training GP’s underserved population. As the hospital developped and nurses in two ongoing randomized control trials in a new multidisicplinary projet I had the opportunity to Switzerland and Bosnia and Herzegovina train in adolescent health and build a multidisciplinary youth clinic with other colleagues in Geneva University hospitals . I am actively involved in clinical work with adolescents and young adults and in training various health professionals (pregraduate, postgraduate and continuous education) especially in the field of primary care adolescent health in Switzerland and in an ongoing project in Bosnia and Herzegovina. I am trainer in motivational interviewing and completed a master’s degree in patient education in 2006.

SPEAKERS´ PROFILES 80 PIERRE-ANDRÉ MICHAUD

Pierre-André Michaud MD health, preventive intervention and policies as applied Full professor in adolescent medicine to young people. He regularly works as a temporary Head of the Multidisciplinary Unit for Adolescent Health adviser for the World Health Organization, UNFPA and Department of Paediatric, University hospital / CHUV UNICEF. He is heavily involved in the coordination of a Vice Dean for Curricular Affairs European training curriculum in adolescent medicine Faculty of Biology & Medicine and health (www.euteach.com) and has developed a strong interest in medical education. P.-A. Michaud, MD, specialized two years in Adolescent Address medicine as a fellow in Sainte Justine Hospital, Montreal and became Head first of a research Prof. PA Michaud, MD group for adolescent health and then head of the UMSA Multidisciplinary Unit for Adolescent Health. His CHUV research has focused on the epidemiology of health 1011 Lausanne and lifestyles of adolescents, including areas such as TEL: 4121 314 37 60 sports and physical activity, eating disorders, sexuality, FAX: 4121 314 37 69 substance use and suicidal conducts. Recently, the e-mail: [email protected] research group has developed an interest in qualitative website: www.umsa.ch approaches and clinical studies focusing on chronic conditions and the use of internet. Over the years, he has developed an expertise in the area of public

ANNA NIEBOER

Anna Nieboer Ph.D. University. Currently she works at the institute of Associate Professor Medical Sociology (UHD) Health Policy and Management of the Erasmus Erasmus University / Erasmus University Medical Centre University Rotterdam. Her main research interests Department of Health Policy and Management concern the organisation of health care and quality of P.O. Box 1738 life. She is principal investigator for the evaluation of a 3000 DR Rotterdam, NL number of large scale complex intervention programs Phone + 31 10 4082804 among which transition care for adolescents. http://oldwww.bmg.eur.nl/personal/nieboer/

Anna Nieboer (1966) studied Sociology at the University of Groningen in the Netherlands. After her graduation in 1992 she worked at the Interuniversity Center for Social Science and Methodology (ICS). In 1997 she finished her dissertation on the consequences of major life-events in the elderly, after which she worked as a coordinator of the research program “The Future of Community”, also conducted at the ICS. From January 2001 until February 2003 she worked as an assistant professor at the department of Health Policy, Economics and Organization of Care at Maastricht

81 SPEAKERS´ PROFILES REBECCA SANDS

Dr Becky Sands has been a Consultant Paediatrician the RCPCH which now allows paediatric trainees in the working at Sherwood Forest Hospitals in UK to have formal training in Young People’s Health. Nottinghamshire, England since 2010. During her She contributed to the joint YPHSIG, RCPCH and training as a General Paediatrican she developed an Department of Health guide to participation, ‘Not Just interest in Young People’s Health and is the current A Phase’, with her work with young people being used secretary of the Young People’s Health Special Interest as an illustration of a practical example of how young Group (YPHSIG) of the Royal College of Paediatrics and people’s voices could be heard to support service Child Health (RCPCH). This group is dedicated to raising development. the profile of young people’s health and promoting the development of high quality health services for young people in the UK. She has used her own experience as a trainee to develope a special study module within

FIONA STRAW

Dr Fiona Straw Consultant Paediatrician Nottingham health and promoting the development of high quality University Hospitals NHS Trust, Nottingham, England. health services for young people in the UK. In 2010 she was co-author of the publication; ‘Not Just A Phase’. Dr Fiona Straw has been a Consultant Paediatrician This guide to the participation of children and young working at Nottingham University Hospitals, people in health services was written by the YPHSIG Nottingham, England since 2003. As a Paediatrician in conjunction with the RCPCH and the Department working in the community she has been able to of Health. The guide offers practical information for develop services for young people within Nottingham clinicians and managers on how to develop a culture particularly in the area of sexual health. She is the lead of participation by young people in health services and for ‘participation’ within the Young People’s Health case studies to illustrate how this might be achieved. Special Interest Group (YPHSIG) of the Royal College of Paediatrics and Child Health (RCPCH). This group is dedicated to raising the profile of young people’s

SPEAKERS´ PROFILES 82 HELEEN VAN DER STEGE

Senior Researcher Rotterdam University Expertise Center Transitions of Care, Rotterdam, The Netherlands

Research topics are: Communication on sexuality and intimate relationships in youth with chronic conditions, adolescents and healthcare, sexual health, language disorders of young children and language screening in the youth health care, parent-child intervention and support services following a neonatal hearing screeening program, language delays and linguistic skills in primary schools, attribution of parents regarding their children’s development.

ANNELOES VAN STAA

AnneLoes van Staa trained as a general and paediatric Her main areas of research are: adolescents nurse before she graduated both in medicine with chronic conditions, transitional care, social and cultural anthropology (specialisation medical participation, self-management, empowerment, anthropology). Since 1994, she works as an assistant nurses, and professionalism. professor in Erasmus University Rotterdam, Institute of Health Policy and Management. In 2003, she was appointed professor “Transitions of Health Care” in Rotterdam University (University of Applied Sciences). Here, she developed a successful research & development programme into Transitions in Young People. She prepares a PhD thesis about the mixed methods research project ‘On Your Own Feet’ into preferences and competencies of adolescents with chronic conditions in their transition to adulthood and adult care. Presently, she is project leader of the Quality Improvement Collaborative “On Your Own Feet Ahead!”, aimed at improving adolescent health care services and at empowering adolescents in self- management and autonomy.

83 SPEAKERS´ PROFILES RUSSEL VINER

Russell M Viner MBBS FRACP FRCPCH FRCP (Lon) PhD (Cantab) in adolescence, particularly around obesity, chronic illness self-management (diabetes), health risk behaviours Russell Viner is an academic paediatrician (currently (alcohol, smoking and drug use) and health services for Reader in Adolescent Health) and adolescent physician young people. Most recently he has become involved in at the UCL Institute of Child Health in London, working international efforts to improve global adolescent health clinically at University College Hospital and Great Ormond · He is currently involved in research grants totally > Street Hospital for Children, London. £9 million, and has published >100 peer-reviewed publications, many in high impact journals. Collaborations He set up the first Adolescent Medicine Service in the UK extend around the UK, to the USA, Europe, African, India jointly between Great Ormond St Hospital for Children and Australia. and University College London Hospitals, and works · He is European Vice-President of the International clinically in adolescent diabetes & endocrinology, obesity Association for Adolescent Health (IAAH) and a Board and complex adolescent problems. Member of the UK Association for Young People’s Health · He works as a consultant on adolescent health for the · He has given >40 keynote lectures in the last 5 years Departments of Health and of Education in the UK, and for in the UK and internationally, including for the annual the WHO internationally. meetings of the paediatric societies of Denmark, Norway, · His research interests focus on the implications of Republic of Ireland, Australia, Ulster and Scotland. adolescent development for physical and mental health

DAMIAN WOOD

Damian Wood is a Consultant Paediatrician with an has assisted in the development of the competency interest in Adolescent Medicine from Nottingham, UK. framework for paediatricians training in adolescent Damian graduated from the University of Manchester medicine and has led the development of a “young in 1995 and was appointed as a consultant selectors” programme to facilitate young people’s paediatrician at Nottingham Children’s Hospital, participation in the recruitment and selection of Queens Medical Centre, Nottingham in 2005 after trainee paediatricians. training in the UK and at the Royal Children’s Hospital, Melbourne, Australia. Damian is the current convenor Contact email: [email protected] of the Young People’s Health Special Interest Group (YPHSIG) of the Royal College of Paediatrics and Child Health (RCPCH) and the lead author of Not Just Phase, A Guide to the Participation of Children and Young People in Health Services (www.yphsig.org. uk) which was published by the YPHSIG and RCPCH in 2010. In his role as training programme director for speciality training in the East Midlands Damian

SPEAKERS´ PROFILES 84 PARTICIPANTS

Sarah Macnee Australia Maria Brask Denmark Sandy Whitehouse Canada Marianne Gammeltoft Denmark Annette Lønskov Denmark Marie Jørgensen Denmark Bente Risager Denmark Mette Spliid Ludvigsen Denmark Berit Nørgaard Denmark Mette Weis O’ Hare Denmark Bjørn Holstein Denmark Mette Wested Denmark Camilla Fau Brinkløv Denmark Morten Schrøder Denmark Casper Andersen Denmark Pernille Due Denmark Charlotte Blix Denmark Pernille Faber Nielsen Denmark Christian Graugaard Denmark Pernille Grarup Hertz Denmark Claudia Fischer Denmark Pernille Wendtland Edslev Denmark Doris Thomsen Denmark Pia Bonde Nielsen Denmark Dorthe Meinike Denmark Rie Salholdt Denmark Emil Rehling Denmark Rikke Karlsen Denmark Ena Thomsen Denmark Ryan Jøhncke Christensen Denmark Freja Frederiksen Denmark Sofie Fensmark Denmark Grete Teilmann Denmark Susanne Munck Denmark Hanne Lund Hansen Denmark Tine Bovien Denmark Hanne Nødgaard Christensen Denmark Tinne Laursen Denmark Helena Friis Jensen Denmark Trine Brøner Denmark Helle Ording Denmark Catherine Lepercq France Inge Pia Christensen Denmark Elsa Massabie France Jakob Højer Larsen Denmark Artemis K. Tsitsika Greece Jens-Christian Holm Denmark Flora Bacopoulou Greece Jesper Irving Reimers Denmark George Chrousos Greece Jesper Johannesen Denmark Ilia Antoniou Greece Jette Svanholm Denmark Mari Janikian Greece Judy Grejsen Denmark Katrin Davidsdottir Iceland Jutta Ølgod Denmark Ronen Aviram Israel Karen Christensen Denmark Anna Nieboer Netherlands Karina Nekes Suhr Denmark Anne Loes Van Staa Netherlands Katrine Villadsen Denmark Helen van der Stege Netherlands Kirsten Boisen Denmark Jane Natascha Triedevi Sattoe Netherlands Lise Werner Denmark Mathilde Strating Netherlands Liselotte Skov Denmark Michelle Engelen Netherlands Lone Petersen Denmark Onno Sijperda Netherlands Lone Aaslet Denmark Susan Jedeloo Netherlands Lotte Ørneborg Rodkjær Denmark Adesegun Fatusi Nigeria Louise Rohini Denmark Ann Britt Sandvin Olsson Norway

85 PARTICIPANTS PARTICIPANTS

Maria Brask Denmark Aud Inger Hvideberg Norway Mariann Grufman Sweden Marianne Gammeltoft Denmark Birgit Friele Norway Mats Swensson Sweden Marie Jørgensen Denmark Christine Øverli Eriksen Norway Nils Lundin Sweden Mette Spliid Ludvigsen Denmark Elisabeth van Roy Norway Sara Ullskog Sweden Mette Weis O’ Hare Denmark Frøydis Olafsen Norway Signy Reynisdottir Sweden Mette Wested Denmark Ingrid Claesson Norway Ylva Tindberg Sweden Morten Schrøder Denmark Irene Ponton Norway Anne Meynard Switzerland Pernille Due Denmark Jan-Petter Odden Norway Christoph Rutishauser Switzerland Pernille Faber Nielsen Denmark Kirsti S. Almås Norway JC Suris Switzerland Pernille Grarup Hertz Denmark Liv Berit Esborg Norway Pierre-Andre Michaud Switzerland Pernille Wendtland Edslev Denmark Liv Fegran Norway Mengche Tsai Taiwan Pia Bonde Nielsen Denmark Liv-Grethe Kristoffersen Norway Mujgan Alikasifoglu Turkey Rie Salholdt Denmark Martin Nielsen Norway Oya Ercan Turkey Rikke Karlsen Denmark Mona Røisland Norway Andrea Goddard UK Ryan Jøhncke Christensen Denmark Reidar Due Norway Barbara Johnson UK Sofie Fensmark Denmark Ruth Helene P. Soldal Norway Christine Eiser UK Susanne Munck Denmark Sølvi Heimestøl Norway Damian Wood UK Tine Bovien Denmark Trond Nordheim Norway Deborah Christie UK Tinne Laursen Denmark Vibeke Karterud Norway Donna Hilton UK Trine Brøner Denmark Helena Fonseca Portugal Eleftheria Konstantoula UK Catherine Lepercq France Karina Vartanova Russia Fiona Straw UK Elsa Massabie France Violetta Shastina Russia Hilary Wyatt UK Artemis K. Tsitsika Greece Mojca Juricic Slovenia Janet McDonagh UK Flora Bacopoulou Greece Jose Casas Rivero Spain Kay Bottrell UK George Chrousos Greece Anna Gutniak Sweden Kerry Jones UK Ilia Antoniou Greece Carina Seidel Sweden Lorraine Case UK Mari Janikian Greece Charlotte Nylander Sweden Lucy Casdagli UK Katrin Davidsdottir Iceland Christina Lindgren Sweden Marie McGee UK Ronen Aviram Israel Eva Zembron-Björk Sweden Mark Howard UK Anna Nieboer Netherlands Fifii Tegenrot Sweden Rebecca Sands UK Anne Loes Van Staa Netherlands Henri Toivonen Sweden Rebekah Ford UK Helen van der Stege Netherlands Jan Magnus de Maré Sweden Russell Viner UK Jane Natascha Triedevi Sattoe Netherlands Johanna Haraldsson Sweden Sam Smith UK Mathilde Strating Netherlands Josephine Haas Sweden Samantha Brierley UK Michelle Engelen Netherlands Karin Ahlberg Sweden Sophie Khadr UK Onno Sijperda Netherlands Kristina Berg Kelly Sweden Vanessa Whitehead UK Susan Jedeloo Netherlands Lars Holmberg Sweden Vicki Young UK Adesegun Fatusi Nigeria Lina Mansson Sweden Valentina Baltag WHO Ann Britt Sandvin Olsson Norway Maria Eva Lidman Sweden

PARTICIPANTS 86 86 OUR SPONSORS:

Hjerteforeningen

87 VENUE AND LOCAL ORGANIZERS The history of Rigshospitalet goes back 250 years to patients are admitted at Rigshospitalet and many of the Denmark’s first genuine hospital. The modern Universi- departments have a large amount of young out patient ty Hospital Rigshospitalet, with its tall grey buildings, is clinic visits. from the 1960s and today it is part of the Capital Region In 2008 The Egmont Foundation granted the establish- of Denmark. ment of Center of Adolescent Medicine at Rigshospita- Rigshospitalet is a highly specialized hospital, which let to complete the vision of improving the conditions with a few exceptions covers all medical specialist areas. for young people suffering from severe acute or chronic Rigshospitalet is one of Denmark’s largest workplaces conditions. Young patients at Rigshospitalet now have with about 8,000 employees broken down into more their own recreational facility - Cafe Hr. Berg, where than 50 professional groups. The hospital is one of Den- they can unwind from the illness and hospitalization. mark’s largest educational institutions within medical The staff at Rigshospitalet is being presented to new science programmes. Every day around 40-60 young knowledge about adolescent patients through courses,

PRACTICAL INFORMATION Rigshospitalet is located just outside central Copenha- TOILETS gen between Østerbro and Nørrebro. You can either Toilets are sited down the stairs in front of the audi- walk to and from most hotels in the city centre as well toriums. as from Nørreport station or take the bus. The following busses pas by Rigshospitalet: DINNER AT TIVOLI GARDENS MONDAY 3A, 6A, 42, 43, 150S, 173E, 184, 185 We are looking forward to welcoming you to a cosy The conference takes place in Auditorium 1 and 2. dinner at Restaurant Grøften in Tivoli Monday even- ing at 7 p.m.. You will receive a ticket for entrance at INTERNET ACCESS Tivoli together with a map of Tivoli and how to find the A free wireless Internet connection is available, but restaurant at the conference. You can stroll through the registration is needed initially. old amusement park and try the rollercoaster or look at Name of wi-fi: RegHGaest all the flowers before or after the dinner. Username and password is enclosed in the registration The dinner is informal and as the restaurant is a covered envelope patio (although with effective heating) we advise you to bring warm clothes. 1. Enable wi-fi connection to RegHGaest 2. Start your internet browser 3. Wait for registration page 4. Enter username and password

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