March 2006 Volume 30 Number 1 ISSN 0311-306X CANCER FORUM Contents nnn Forum: Psycho-oncology Overview 3 Jane Turner Psychosocial aspects of sexuality and fertility after a diagnosis of breast cancer 6 Belinda Thewes and Kate White The effect of adjuvant chemotherapy on cognitive functioning in early breast cancer: 10 implications for outcomes research and oncology practice Geoffrey F Beadle et al. Exercise in cancer recovery: an overview of the evidence 13 Sandra C Hayes and Beth Newman Psychosocial issues for people with advanced cancer: overcoming the research challenges 18 Penelope Schofield et al. Challenges experienced by informal caregivers in cancer 21 Afaf Girgis et al. Leading the way – best practice in psychosocial care for cancer patients 25 Karen Luxford and Jane Fletcher Translating psychosocial care: guidelines into action 28 Suzanne K Steginga et al. The Psycho-oncology Co-operative Research Group 32 Phyllis Butow and Rebecca Hagerty nnn Articles Diversity and availability of support groups 35 Laura Kirsten et al. Promoting shared decision making and informed choice for the early detection of prostate 38 cancer: development and evaluation of a GP education program Robyn Metcalfe et al. nnn Reports Support for research 43 Australian behavioural research in cancer 57 COSA Annual Scientific Meeting 2005 65 Crossing the boundaries: a new era in cancer consumer participation 65 nnn News and announcements 67 nnn Book reviews 70 nnn Calendar of meetings 81 CancerForum Volume 30 Number 1 March 2006 1 CANCER FORUM FORUM Psycho-oncology OVERVIEW Jane Turner n Department of Psychiatry, University of Queensland Email: [email protected] “I stared down her housedress as she bent over to bathe me. their capacity to respond appropriately in such contexts. One breast moved with the motion of her scrubbing me. Where This edition fits fairly neatly into two sections. The the other one would have been there was a scar. Something first encompasses areas of direct clinical relevance. frightening had happened; I just didn’t know what…Mom and Although at first glance these papers cover disparate I went on pretending everything was normal, no matter what changed around us, and no matter how sick she got. I went on themes, in fact their common link is attention to issues believing that my mother couldn’t disappear, that could never affecting quality of life. The second section addresses happen. And I believed it couldn’t happen because it would the integration of evidence into clinical practice and have been impossible for me to go on without her”.1 strategies to enhance the already impressive research history in Australia. Frances Cournos was just 11 years of age when her mother died from cancer. The grief and sadness she Research advances expresses resonate with the experience of generations of Australians for whom the diagnosis of cancer was all the Sexuality and fertility more devastating because of a reluctance to talk about the situation and a dearth of supportive interventions to The introduction of breast conserving surgery was assist patients and their families to cope. a milestone in treatment of breast cancer, as it was Since the 1970s the discipline of psycho-oncology associated with demonstrably less impact on body has evolved with the explicit aim of addressing the image and sexuality than mastectomy.7 However, as psychological, social and behavioural dimensions described by Thewes and White, sexuality encompasses of cancer, at all stages of the disease, from the more than simply “loss of body parts”8 and it is perspective of both patient and family.2 Internationally important to conceptualise body image and sexuality and particularly in Australia, there have been advances in the acknowledgement of the emotional dimensions broadly, appreciating the woman in her social context. of the cancer experience, although identification of As there has been little research into ways of promoting patient distress is imperfect,3 increasingly clinicians are enhanced adjustment in terms of body image and aware of critical issues such as anxiety and depression sexuality, the multicentre study evaluating a nurse-led and the effectiveness of treatments for these common intervention to provide education and promote referral complications of cancer.4 Similarly, there has been increasing recognition of the benefits of communication is especially valuable, with the potential to improve skills training in improving the capacity of health outcomes for women in a cost-effective and timely professionals to respond to the emotional concerns of manner. It is unclear to what extent the findings of this 5,6 patients with cancer. In this regard, the Breast Section study have potential to be expanded to other cancer of the Royal Australasian College of Surgeons and the Medical Oncology Group of Australia have demonstrated streams, for example head and neck cancers where outstanding leadership in promoting the importance of morbidity is high,9 however this project is an important communication skills training for members. start. Attention to the emotional dimensions of the cancer The level of unmet need regarding provision of experience, including the capacity of health professionals information about fertility described in this paper is of to respond sensitively to patients and their families, is concern and clearly Australian research is providing a useful framework to appreciate the information and increasingly being seen as fundamental to cancer care. supportive care needs of women diagnosed with However these are broad areas and innovative research breast cancer. This work highlights the importance of in Australia is providing key insights into areas hitherto excellent communication, as it is clear that the concerns relatively neglected. This edition of Cancer Forum, and aspirations of women may not be identical to dedicated to psycho-oncology, aims to update readers those perceived by health professionals. Furthermore, on some of these emerging areas of research. All are information regarding fertility is likely to emerge as an of key clinical relevance, in many instances addressing important area informing decision-making for younger women with breast cancer. issues of particular concern to health professionals who have felt that lack of evidence has previously limited Cognition and chemotherapy 2 CancerForum Volume 30 Number 1 March 2006 CancerForum Volume 30 Number 1 March 2006 3 FORUM FORUM Adjuvant chemotherapy in the treatment of breast patients and an area which merits investigation in this psychological risk is crucial for the future development approach for participants and the planned DVD will be a cancer has been reported to be associated with regard is the attitude of patients and their families who of enhanced supportive and other interventions to valuable resource for use in a variety of settings. improved survival,10 although anecdotally women have may have powerful perceptions about the need for rest reduce morbidity in this population. and calm to cope with cancer, rather than activity. Future research opportunities complained that this may come at the cost of “chemo Promoting implementation of evidence and fog”. Subjective complaints of cognitive difficulties by Advanced disease The establishment of the Psycho-oncology Co-operative future research Research Group will be of interest to researchers and women receiving chemotherapy have only recently Despite improved treatments, many patients will clinicians alike. The group has the potential to “value been systematically examined. Given the enormity develop advanced cancer. As pointed out by Schofield Best practice in psychosocial care of the cancer diagnosis and high rates of anxiety and add” to large-scale trials in oncology and provides et al the emotional impact of the diagnosis of advanced Given the short time in which psycho-oncology has depression in women with early breast cancer,11 it has opportunities for larger-scale collaborative research disease is profound, yet this is an area in which research existed as a clinical and research entity, progress has perhaps been tempting to attribute these complaints to than has previously been conducted in psycho-oncology lags behind that for early-stage disease. been extraordinary. The amount of evidence about co-morbid depression, however the paper by Beadle et in Australia, in addition to promoting high-quality In addition to describing the emotional impact of the psychosocial impact of cancer and the benefits of al highlights the cognitive changes demonstrated when research by new researchers. The group welcomes advanced cancer, this paper emphasises the intimate interventions is such that concise summaries of the neuropsychological testing is performed. As the authors new members, and readers of Cancer Forum are invited relationship between emotional adjustment and physical evidence and clinically-relevant recommendations are note, there are methodological limitations in existing to join the group using the contact details provided. symptoms, reminding health professionals that in this increasingly necessary to assist busy clinicians. Luxford research, however the prospective study currently being population in particular these cannot be considered in and Fletcher provide an overview of some milestone In summary, despite the relatively small population conducted at the Wesley Hospital is likely to provide isolation. of clinicians and researchers in psycho-oncology in Australian developments, describing the development