Department of Psychiatry, University of Queensland
“I stared down her housedress as she bent over to bathe me. One breast moved with the motion of her scrubbing me. Where the other one would have been there was a scar. Something frightening had happened; I just didn’t know what…Mom and I went on pretending everything was normal, no matter what changed around us, and no matter how sick she got. I went on believing that my mother couldn’t disappear, that could never happen. And I believed it couldn’t happen because it would have been impossible for me to go on without her”.1
Frances Cournos was just 11 years of age when her mother died from cancer. The grief and sadness she expresses resonate with the experience of generations of Australians for whom the diagnosis of cancer was all the more devastating because of a reluctance to talk about the situation and a dearth of supportive interventions to assist patients and their families to cope.
Since the 1970s the discipline of psycho-oncology has evolved with the explicit aim of addressing the psychological, social and behavioural dimensions of cancer, at all stages of the disease, from the perspective of both patient and family.2 Internationally and particularly in Australia, there have been advances in the acknowledgement of the emotional dimensions of the cancer experience, although identification of patient distress is imperfect,3 increasingly clinicians are aware of critical issues such as anxiety and depression and the effectiveness of treatments for these common complications of cancer.4 Similarly, there has been increasing recognition of the benefits of communication skills training in improving the capacity of health professionals to respond to the emotional concerns of patients with cancer.5,6 In this regard, the Breast Section of the Royal Australasian College of Surgeons and the Medical Oncology Group of Australia have demonstrated outstanding leadership in promoting the importance of communication skills training for members.
Attention to the emotional dimensions of the cancer experience, including the capacity of health professionals to respond sensitively to patients and their families, is increasingly being seen as fundamental to cancer care. However these are broad areas and innovative research in Australia is providing key insights into areas hitherto relatively neglected. This edition of Cancer Forum, dedicated to psycho-oncology, aims to update readers on some of these emerging areas of research. All are of key clinical relevance, in many instances addressing issues of particular concern to health professionals who have felt that lack of evidence has previously limited their capacity to respond appropriately in such contexts. This edition fits fairly neatly into two sections. The first encompasses areas of direct clinical relevance. Although at first glance these papers cover disparate themes, in fact their common link is attention to issues affecting quality of life. The second section addresses the integration of evidence into clinical practice and strategies to enhance the already impressive research history in Australia.
Sexuality and fertility
The introduction of breast conserving surgery was a milestone in treatment of breast cancer, as it was associated with demonstrably less impact on body image and sexuality than mastectomy.7 However, as described by Thewes and White, sexuality encompasses more than simply “loss of body parts”8 and it is important to conceptualise body image and sexuality broadly, appreciating the woman in her social context. As there has been little research into ways of promoting enhanced adjustment in terms of body image and sexuality, the multicentre study evaluating a nurse-led intervention to provide education and promote referral is especially valuable, with the potential to improve outcomes for women in a cost-effective and timely manner. It is unclear to what extent the findings of this study have potential to be expanded to other cancer streams, for example head and neck cancers where morbidity is high,9 however this project is an important start.
The level of unmet need regarding provision of information about fertility described in this paper is of concern and clearly Australian research is providing a useful framework to appreciate the information and supportive care needs of women diagnosed with breast cancer. This work highlights the importance of excellent communication, as it is clear that the concerns and aspirations of women may not be identical to those perceived by health professionals. Furthermore, information regarding fertility is likely to emerge as an important area informing decision-making for younger women with breast cancer.
Cognition and chemotherapy
Adjuvant chemotherapy in the treatment of breast cancer has been reported to be associated with improved survival,10 although anecdotally women have complained that this may come at the cost of “chemo fog”. Subjective complaints of cognitive difficulties by women receiving chemotherapy have only recently been systematically examined. Given the enormity of the cancer diagnosis and high rates of anxiety and depression in women with early breast cancer,11 it has perhaps been tempting to attribute these complaints to co-morbid depression, however the paper by Beadle et al highlights the cognitive changes demonstrated when neuropsychological testing is performed. As the authors note, there are methodological limitations in existing research, however the prospective study currently being conducted at the Wesley Hospital is likely to provide valuable insights into the nature and extent of cognitive difficulties following treatment with chemotherapy.
This is an important area of research. A central issue is the nature of the demonstrated deficits and the description of Beadle et al will be of interest for clinicians for whom this is not their core area of expertise. Executive dysfunction can indeed be “silent” at a casual social level, but profoundly disabling for the person functioning in areas requiring self-monitoring and correction, planning and organisation. Given the nature of these deficits, it may be, for example, that a lawyer may decline the offer of adjuvant chemotherapy lest she experience cognitive deficits. This has clear implications for informed decision-making. Current knowledge does not provide insights into potential risk factors for the development of cognitive deficits, nor indeed the effectiveness of any remediation or longer-term outcome; these areas merit further examination.
Improvement in cancer survival has in the past been seen as an outcome in itself, but increasingly the notion that the patient should be “grateful and get on with their life” is negated by research demonstrating significant residual side-effects of treatment for many patients.12 There is increasing attention to the previously unmet needs of cancer survivors, with recommendations that there be institutional responses to the difficulties experienced by this population.13
One of the pressing residual concerns of cancer survivors is fatigue, but it appears that the identification of fatigue and the response is often inadequate.14 The paper by Hayes and Newman illustrates the benefits of exercise for cancer patients, with often marked reductions in fatigue and improvements in other domains such as body image and mood. Research in this area is a striking reminder of the importance of making treatment recommendations based on evidence rather than personal opinion – the intuitive advice received by many patients who complain of fatigue is to rest, yet this is counter to the evidence that exercise has an important role in promoting wellness in this population. As indicated by Hayes and Newman, there remain major issues in promoting physical activity in a systematic manner for patients and an area which merits investigation in this regard is the attitude of patients and their families who may have powerful perceptions about the need for rest and calm to cope with cancer, rather than activity.
Despite improved treatments, many patients will develop advanced cancer. As pointed out by Schofield et al the emotional impact of the diagnosis of advanced disease is profound, yet this is an area in which research lags behind that for early-stage disease.
In addition to describing the emotional impact of advanced cancer, this paper emphasises the intimate relationship between emotional adjustment and physical symptoms, reminding health professionals that in this population in particular these cannot be considered in isolation.
Research in this patient population has often been considered “too hard”. This paper considers the impediments to research with patients with advanced disease and overviews some practical strategies which may assist in research design. At a fundamental level, it is also important to reflect on ways in which the responses of health professionals to this patient population might impact on research. Treating patients with advanced cancer is often stressful for health professionals, and in particular exposure to the deaths of patients may lead to a sense of “accumulative loss,”15 with the potential to withdraw from the emotional issues facing patients as a protective measure.16 It is possible that some of the methodological difficulties relate not only to the illness and status of patients, but a perception of researchers that it is inappropriate to conduct research in this population and a desire to avoid being confronted by the emotional concerns of this population. However, qualitative research with women with advanced breast cancer has revealed extremely high recruitment rates and acceptability of exploration of highly sensitive issues.17
The contribution by informal carers of cancer patients is enormous, but it is only recently that the special needs of carers for information and support are being understood, with a view to improving services and support. The paper by Girgis and colleagues reminds us that it is appropriate to consider the patient within their social context and not assume that the emotional and informational needs of the patient and caregivers are identical. For many health professionals, this may raise concerns about confidentiality and privacy, however open discussion with patients about the demands of illness and treatment and the importance of adopting an inclusive approach to treatment is likely to be reassuring rather than confronting. Patients may be reluctant to voice their own concerns as they consider the doctor is too busy or not interested,18 so it is likely that they will need the active encouragement of clinicians to raise concerns about their caregivers. The research initiatives described by Girgis et al highlight the high quality of Australian research into areas previously neglected. In particular, efforts to identify carers at increased psychological risk is crucial for the future development of enhanced supportive and other interventions to reduce morbidity in this population.
Best practice in psychosocial care
Given the short time in which psycho-oncology has existed as a clinical and research entity, progress has been extraordinary. The amount of evidence about the psychosocial impact of cancer and the benefits of interventions is such that concise summaries of the evidence and clinically-relevant recommendations are increasingly necessary to assist busy clinicians. Luxford and Fletcher provide an overview of some milestone Australian developments, describing the development of a variety of clinical practice guidelines and their implementation. Evidence about the usefulness of the workshops conducted nationally as part of the implementation of the Clinical practice guidelines for the psychosocial care of adults with cancer is compelling and demonstrates increasing clinical interest in psychosocial aspects of cancer. Incorporation of psychosocial care into routine clinical care requires strategic approaches to generate changes in healthcare systems,19 and the initiatives of the National Breast Cancer Centre described in this paper are likely to enhance identification of psychosocial risk factors and provide a mechanism for reviewing further progress in the provision of psychosocial care.
Translation of evidence into practice
Steginga et al provide a perspective on translation of the evidence about psychosocial interventions into clinical practice at a community level. The recently-established telebased Cancer Counselling Service is an innovative response to the geographic barriers faced by many patients with cancer, and builds on the acceptability of The Cancer Council Helpline. This service has been developed within a tiered framework for provision of psychosocial care. Explicit in this model is the notion that a large proportion of patients will benefit from provision of information and good communication from health professionals without the need for further assistance, a smaller number requiring more specialist services. Indeed, specialised psychosocial support for all patients is not viable, even in large metropolitan centres; in rural and remote areas access to such services in often extremely limited. The tiered model of care has intrinsic appeal, as it encourages the tailoring of scarce resources to the particular needs of the individual. This is apt, given accumulating evidence that a sizeable proportion of patients do not benefit from (nor presumably require) highly specialised interventions.20 Evaluation of the pilot workshops confirms the practical value of a tiered approach for participants and the planned DVD will be a valuable resource for use in a variety of settings.
Future research opportunities
The establishment of the Psycho-oncology Co-operative Research Group will be of interest to researchers and clinicians alike. The group has the potential to “value add” to large-scale trials in oncology and provides opportunities for larger-scale collaborative research than has previously been conducted in psycho-oncology in Australia, in addition to promoting high-quality research by new researchers. The group welcomes new members, and readers of Cancer Forum are invited to join the group using the contact details provided.
In summary, despite the relatively small population of clinicians and researchers in psycho-oncology in Australia, work of high quality and clinical relevance has emerged over the past few years. The papers in this edition of Cancer Forum provide an interesting overview of emerging areas, all clearly demonstrating the potential to continue to improve the care of patients with cancer, their carers and their families.
2. Holland J. IPOS Sutherland memorial lecture: An international perspective on the development of Psychosocial Oncology: Overcoming cultural and attitudinal barriers to improving psychosocial care. Psycho-oncology. 2004.13:445-459.
6. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. The Lancet. 2002. 9307:650-656.
11. Kissane DW, Clarke DM, Ikin J, Bloch S, Smith GC, Vitetta L, McKenzie DP. Psychological morbidity and quality of life in Australian women with early-stage breast cancer: a cross-sectional survey. MJA. 1998. 169: 192-196.
14. Curt GA, Breitbart W, Cella D, Groopman JE, Horning SJ, Itri LM et al. Impact of cancer-related fatigue on the lives of patients: New findings from the Fatigue Coalition. Oncologist. 2000.5:353-360.
20. Chan YM, Lee PWH, Fong DYT, Fung ASM, Wu LYF, Choi AYY, Ng TY, Ngan HYS, Wong LC. Effect of individual psychological intervention in Chinese women with gynaecological malignancy: A randomised controlled trial. Journal of Clinical Oncology. 2005.23:4913-4924.