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Edited by Maria Hewitt, Susan L Weiner, Joseph V Simone. Washington DC: The National Academies Press, 2003, £23.95, pp 206. ISBN 0 309 08898 4
Faced with another book about survivors of childhood cancer, the first thing to ask was, “Is this any different from the others? What does it add that other recently published books or the latest detailed reviews have not already said? Will it be just another list of the late effects of therapy?” But this book is indeed different. It is a report from the National Cancer Policy Board in the United States as part of an initiative to address issues of concern for cancer survivors and does, I think, move forward the discussion about how the care for patients who have survived cancer should be provided. But how far?
The report determines that “an individual is considered a cancer survivor from the time of diagnosis through the balance of his/her life. Family members, friends and care-givers are also impacted by the survivorship experience and are therefore included in this definition”. It proposes a comprehensive policy agenda for the care of this unique group of individuals and gives a series of seven recommendations relating to clinical guidelines, minimum standards, improving awareness, education and training, future delivery of care, and research. It is not a list of late effects (although these are well summarised in chapter four) but rather looks forward to how the follow up of patients who are survivors of childhood cancer can and should be addressed.
The three main themes explored in the report are provision of services, the education and training of professionals, and the areas where research needs to be conducted, not only the identification, prevalence, and aetiology of late effects, but exploring interventions that may ameliorate late effects and systematically evaluating treatment approaches and standards of follow up care.
Although this report is entirely based on practice in the USA, in many countries, including the UK, there is no organised, defined system of care for these patients. Furthermore as cancer therapy changes (intensification of chemotherapy for some, minimal risk of any late effects of therapy for others), so the needs of this population continually change. The report explores different systems of care provision and recognises that there is no consensus where care should be provided and by whom. There is a significant variation in cancer care across the country. Both in the USA and the UK, there is a need for evidence based clinical practice guidelines for the carers of survivors of cancer.
One of the strengths of this report is the background epidemiology and the chapter on the late effects. These data presented are, in part, based on the Childhood Cancer Survivor Study, a cohort study of 20 227 five-year survivors of childhood cancer diagnosed from 1970 to 1986 in the USA. The 10.8-fold excess in overall mortality requires reflection. Another key chapter is that on “delivering survivorship care”. Proposals for ideal follow up systems are given but, perhaps more importantly, the authors reflect on the lack of evidence there is for appropriate systems of follow up and the need to explore novel strategies such as distance networking through internet and telecommunications. The use of primary nurse-led care or care co-ordinators, from a variety of healthcare backgrounds is discussed. The challenge of crossing different sectors (medical, social care, education) to inform carers of the needs of this group of patients, optimise their care, and share responsibility for the needs of this patient group is also recognised.
One area of particular relevance not only to survivors of childhood cancer but also for other children with chronic diseases and indeed adults who have survived cancer, is the potential difficulties with future employment and life or health insurance. Although there may be differences between the United States and Europe relating to employment law, insurance, and disability programmes, nonetheless the principles of defending the rights of the patients and the provision of appropriate help and advice with insurance applications applies.
It is time to move forward and to consider the responsibilities of health care providers and others for the needs of cancer survivors. With an estimate of 1 in 810 individuals under 20 and 1 in 640 young adults (aged 20–39) having a history of cancer, the needs of this expanding population must now be addressed. This interesting report adds to that debate although inevitably cannot provide all the answers.
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