Journal of Pediatric Psychology Advance Access originally published online on July 20, 2007
Journal of Pediatric Psychology 2007 32(9):1140-1150; doi:10.1093/jpepsy/jsm052
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Beyond Survival: Quality of Life and Follow-up After Childhood Cancer
Department of Psychology, University of Sheffield, Sheffield, S10 2TP UK
All correspondence concerning this article should be addressed to Christine Eiser, Department of Psychology, University of Sheffield, Sheffield S10 2TP, UK. E-mail: c.eiser{at}sheffield.ac.uk.
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Abstract |
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Objectives To discuss (a) the impact of late physical and psychological effects on quality of life (QOL) among survivors of childhood cancer, (b) the rationale for providing follow-up care, and (c) potential value for survivors. Methods Research related to four areas was summarized: (a) the late physical and psychological effects experienced by survivors and possible impact on health-related QOL, (b) assessment of QOL, (c) rationale for offering follow-up, and (d) assessment of its value to survivors. Results Evaluation of follow-up can include identification and treatment of second cancers, but these are rarely identified in clinic. Evaluation, therefore, needs to emphasize value for survivors and can include improved QOL, disease information, screening attendance, and lifestyle behaviors especially smoking. Conclusions Multi-disciplinary models of follow-up are required to address the range of effects identified after childhood cancer. Systematic assessment of QOL should be an integral part of follow-up in order to facilitate communication and broaden the scope of the consultation.
Key words: adolescents; childhood cancer survival; follow-up; quality of life.
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Introduction |
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Cancer is a very rare disease in children, affecting 1 in 300 below 16 years of age (Ries et al., 1999
). Over the last 50 years or so, it has changed from an inevitably fatal condition to one that is potentially curable, with overall survival rates approaching 75% (Gatta, Capocaccia, Coleman, Ries, & Berrino, 2002), and possibly 90% for acute lymphoblastic leukemia (ALL; Pui & Evans, 2006). As survival rates have improved, it is clear that a proportion of survivors experience late-effects as a consequence of the disease itself or the treatment needed. Late-effects are adverse side effects of cancer and its treatment can occur many months or years after completion of treatment. This rises questions about how best to inform patients about the potential risks to their future health, how frequently they should be monitored for these late-effects and the kind of follow-up they should be offered. On the assumption that early identification of late-effects is conducive to better outcomes, frequency needs to be sufficient to identify problems but not so frequent as to cause unnecessary distress to survivors. For service providers, provision of follow-up services is complicated by the increasing numbers of survivors, the fact that they may be too old to attend children's services and the relatively limited resources available. In addition, the wide range of late-effects requires a multi-disciplinary approach to care.
As was often the way, Ray Mulhern led the way in identifying this problem and raising awareness of the psychological late-effects potentially associated with surviving childhood cancer. In one of the first papers to address the issue, Mulhern, Wasserman, Friedman and Fairclough (1989) concluded that survivors who were more than 2 years free of disease had school-related problems and unexplained somatic complaints at more than 4 times the frequency of peers. They concluded that general pediatricians must assume some responsibility for the extended follow-up care of these children.
Awareness of late-effects and surveillance of survivors is increasingly acknowledged, and has been the focus of several recent meetings (e.g., www.eslccc2007.com) and publications (Wallace & Green, 2004). However, many questions remain about who, when, or how services should be organized. Given this problem, the aims of this article are to summarize current knowledge about the prevalence and timing of late-effects, the impact of late-effects on QOL, the implications for follow-up services, and finally consider how we can best evaluate the effectiveness of clinics especially from the perspective of survivors. Most discussion about the optimal model of follow-up care has focused on physical problems, but survivors also experience psychological problems as a consequence of the illness (Hobbie et al., 2000) or associated with anxiety about future health. For both reasons, the psychological care of patients is also important and needs to be an integral part of routine assessment.
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Compromises to Long-term Quality of Life: Late-effects |
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Five years after the end of treatment, survivors of childhood cancer have an 11-fold increased risk of death compared with peers in the general population (Mertens et al., 2001
). The risk is greater for females (18.2-fold), those diagnosed below 5 years (14-fold) and those with a diagnosis of leukemia (15.5-fold) or central nervous system (CNS) tumor (15.7-fold). Second cancers, the most common cause of death, can occur up to 30 years after the end of treatment (Robison & Mertens, 1993).
Approximately two-thirds of survivors experience physical (Hudson et al., 2003; Schwartz, 2003; Stevens, Mahler, & Parkes, 1998; Wallace & Green, 2004) or psychosocial late-effects (Eiser, 2004; Glover et al., 2003; Hobbie et al., 2000) and almost 25% experience at least one late-effect that is life-threatening (Stevens et al., 1998; Oeffinger, 2003). Concerns about late-effects initially focused on those occurring within 5 years of diagnosis, but as survival times improved, it became clear that late-effects could occur at any time and sometimes many years later. Neglia and Nesbit (1993) divided late-effects into three categories: early or Stage 1, which are those seen in the first 5 years following completion of therapy; intermediate or Stage 2, which occur 5–20 years from completion and very late or Stage 3, which occur more than 20 years from completion of therapy. Common problems include disturbed endocrine function, impaired gonadal function, cardiomyopathy, obesity, reduced bone mineral density (osteopenia), and second malignancy (Wallace & Green, 2004). A continuum of late-effects has been identified from the relatively minor, through to those that are extremely severe and cause a high rate of morbidity and mortality (Robison, 1993). The range of late-effects that can be experienced and the long time delay involved pose huge challenges for follow-up care of survivors.
In addition to these physical late-effects, survivors can experience a wide range of learning problems (Eiser, 2004), and are less likely to attend college as young adults (Haupt et al., 1994). Consequently, they may experience compromised opportunities for work and employment. Difficulties making friends (Noll et al., 1997) and establishing intimate relationships (Mackie, Hill, Kondryn, & McNally, 2000) have also been reported. Some 12% of the survivors experience post-traumatic stress disorder (PTSD) often many years after diagnosis (Hobbie et al., 2000). High risk factors for psychosocial problems include CNS tumors, CNS directed-therapy, premorbid learning difficulties, and failure to graduate from high-school (Zebrack et al., 2004).
Thus, QOL of survivors can be compromised in many ways. Survivors live with uncertainty about their future health, concern about relapse, and restrictions associated with late effects, and have to accept compromised physical and social functioning. They may be cured of cancer, but at the same time may be expected to attend regular hospital follow-up appointments and take daily medication. They can experience restrictions associated with the primary disease or its treatment, and many are aware of the possible risks to their future health. They can also experience anxieties and worries about late-effects and possibilities of relapse or second cancers. Survivors are acutely aware that they are different from their peers. There can be conflicting expectations placed on the cancer survivor, in being "normal" while also acknowledging the consequences of the disease. Thus, "issues facing the cancer survivor are not extensions of the issues facing the cancer patient in treatment" (Aziz, 2002, p. 3496S).
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QOL |
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Health-related QOL refers specifically to the impact of health and illness and is usually distinguished from broader concepts of general well-being. Health-related QOL is recognized to be a multidimensional concept comprising a number of domains (Spieth & Harris, 1996
). Core domains include physical, social, emotional, and cognitive functioning. Additional domains thought to be especially pertinent for young adults (body image, autonomy) have also been proposed.
Challenges to assessment of QOL in survivors include those that are common to all assessment, such as establishing reliability and validity (Drotar, 1998). Others are specific to child cancer survivors. Critically, QOL reflects the views of the individual and not those of proxy caregivers (Eiser & Morse, 2001). This emphasis on the individual perspective has proved a challenge to measurement, especially where the patient is too young, disabled, or ill to be able to provide the necessary information.
A basic distinction has been made between generic and disease-specific measures. Generic measures are excellent if the research question involves a comparison of survivors against the normal population, i.e., if we want to know how well survivors function in comparison with age- and gender-matched peers. In these cases, measures such as the SF-36 (Ware, Snow, Kosinski, & Gandek, 1993) for adults or the PedsQL (Varni, Seid, & Rode, 1999) for children have much to recommend them, especially in that they have excellent psychometric properties and population norms.
Generic measures, however, are not sensitive to the specific issues likely to affect survivors, nor are they likely to be especially of value in late-effects clinics. Disease-specific measures are more suitable where the question is about how the illness and its treatment impact on the patient's life. Disease-specific measures are considered essential when evaluating outcomes in clinical trials. However, currently available measures (e.g., The Pediatric Cancer Quality of Life Inventory: Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002; Varni et al., 1999) are more appropriate for early stages of treatment, as they include questions about the impact of physical symptoms or medical procedures on QOL. Again, these issues are not likely to be of concern to survivors. Furthermore, on-treatment measures tend to focus on issues relevant to young children, whereas survivors are necessarily older. Measures for survivors therefore need to include issues of relevance to young adults, such as gaining independence from their family and establishing intimate relationships, and place perhaps less emphasis on school progress or social relationships in the classroom. At the same time, measures for adults may also be limited, in that the concerns of older adults with established employment and families are not necessarily the same as those for young adults making their way in life, and contemplating their futures. Measurement of QOL for young adult survivors therefore poses very special challenges that are not the same as those that need to be considered when thinking about QOL in children or older adults following cancer.
Assessment of QOL in survivors has often relied on measures developed for more general purposes (Last, Grootenhuis, & Eiser, 2005), but specific measures have also been described. Ferrell, Dow, and Grant (1995) reported a 41-item measure to assess physical, psychological (distress and fear), social, and spiritual domains of QOL in adult survivors. Both positive and negative outcomes were included, i.e., not only how cancer was associated with difficulties and problems but also how the experience of coping facilitated more positive outcomes.
Zebrack and Chesler (2001) concluded that there were difficulties in using this measure with young adult survivors aged between 16 and 29 years. Two questions (recalling distress at diagnosis and distress during treatment) were not completed by 8% of the sample, perhaps because they were very young during treatment. Three factors representing psychological, psychosocial issues and fears accounted for the dominant share of variance, while physical symptoms, distress, and spiritual issues contributed only marginally to the overall level of variance explained. These findings led the authors to conclude that physical functioning was not assessed adequately by the measure, perhaps because of the greater vitality in younger people compared with adult survivors, or because they had not yet reached developmental milestones that might affect their responses (e.g., child bearing). Some items about religious behavior also seemed less relevant than had been for the adult sample.
Measures described by Bhatia and colleagues were based on extensive exploratory work with young people, and therefore potentially overcome the shortcomings of measures derived from survivors of adult cancers. They include the MMQL-YF for young survivors aged 8–12 years (Bhatia et al., 2004), and the MMQL-Adolescent form (Bhatia et al., 2002) for those aged between 13 and 20 years. The adolescent form includes seven subscales to assess physical, cognitive, psychological, social functioning, physical symptoms, body image, outlook on life, and intimate relations. Differences in predicted directions were noted between healthy young people, those on treatment for cancer and survivors on subscales measuring physical, cognitive, psychological, and social functioning, but not on the remaining three subscales. Initial investigation suggests that both forms have adequate psychometric properties, though further work is warranted. Thus, age-appropriate measures are now available, that could be used to assess QOL in survivors, either as part of research programs or in evaluating clinical interventions.
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Organization of Follow-up Services |
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Comprehensive follow-up should include risk-based health care screening, surveillance, and prevention taking into account individual treatment risks, genetic predispositions, and lifestyle behaviours (Skinner, Wallace, & Levitt, 2006
). These are all of potential value both to scientists, especially where identification of late-effects has implications for improved protocols for future patients. There can also be specific advantages for survivors, in that follow-up provides an opportunity to gain information about their past illness, its potential impact on their future lives and also learn about reducing the risk of late-effects in the future, for example, through screening, prevention, and health promotion.
These goals are ambitious, not least because there are a number of challenges to organizing care for survivors. These include the increasing number of survivors, the range of late-effects identified and the time-scale over which late-effects can emerge. Frequency of follow-up needs to take into account latencies between specific cancers, subsequent late-effects and interactions between treatments and between treatment and individual patient susceptibility (Robison, 1993). It is not possible to offer all survivors the same level of care, and therefore some system needs to be established to ensure that those most in need are able to access the appropriate specialist services. At the same time, it is not necessary to offer appointments to survivors who are at relatively low risk of cancer-related complications.
The important question is therefore how we can best categorize survivors according to need. The Late-Effects Normal Tissue (LENT) system was designed to grade radiation-induced late-effects but does not include those secondary to surgery or chemotherapy (Rubin, Constine, Farjardo, Phillips, & Wasserman, 1995). A simple 4-point scale (surgery with or without short chemotherapy protocols; brain tumor surgery and low or standard risk protocols; multiple treatment modalities and high-risk disease, metastatic disease, or stem cell transplantation has also been proposed (Kazak, McClure, & Alderfer, 2004). The Common Toxicity Criteria, Version 2 (CTCv) was developed to compare acute toxicities, but has been successfully modified to grade late-effects (Oeffinger, Eshelman, Tomlinson, Buchanan, & Foster, 2000).
In the UK, a relatively simple three-level model, shown in Table I and based on expert opinion has been proposed specifically to guide intensity and frequency of follow-up in childhood cancer (Wallace et al., 2001). Where initial treatment is limited to surgery or low-risk chemotherapy, postal or telephone follow-up is recommended (Level 1). Nurse or GP-led follow-up is considered appropriate for those treated with chemotherapy and/or low-dose radiation (Level 2), and medically supervised follow-up for those treated with radiotherapy (>24Gy) or total body irradiation (Level 3). There is good agreement between clinic staff in assigning cancer survivors to one of the three levels, and survivors in the different levels differ predictably in number of symptoms and late-effects reported (Eiser et al., 2006). Thus, survivors assigned to Level 2 report fewer symptoms than those assigned to Level 3. While these recommendations may be used as a guide, it is important that there is flexibility in the system so that survivors can move between levels if this is more appropriate for them.
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Evaluating the Benefits of Follow-up from Survivors’ Perspectives
In the current financial climate, it is vital that any clinical service is shown to be cost-effective and meets its defined aims. Depending on the purpose of a clinic, cost-effectiveness might be measured in terms of the numbers of children vaccinated, or speed with which cancer patients are referred to specialist care. These kinds of targets are not applicable in clinics for survivors of childhood cancer. In fact, there is little evidence that incidences of relapse are detected in clinic (Kattlove & Winn, 2003
). Evaluation is therefore dependent on "softer" targets such as increasing survivors’ knowledge and awareness of future problems, motivating self-care behavior and improving QOL. The limited evidence currently available to address these questions will now be considered.
Knowledge and Attitude to Follow-up
Understanding why attendance is recommended becomes especially important as survivors gain independence from parents and make their own decisions about whether or not to attend clinic. However, misconceptions are common among survivors (Kadan-Lottick et al., 2002; Zebrack et al., 2004). Written information is increasingly available for survivors, usually with the goal to improve self-care and understanding of why clinic attendance is recommended (Griffiths, 2006), and can improve knowledge and attitude to follow-up (Absolom, Eiser, Greco, & Davies, 2004).
Screening
While the ultimate goal is to develop treatment protocols that are associated with fewer late-effects, there remains considerable scope for secondary interventions for today's survivors who have been adversely affected by past or current treatments. Late-effects clinics can provide an opportunity for screening, treatment, and counselling. Recommendations have been made in the US (Children's Oncology Group: COG LTFU 2006) and UK (UKCCSG Practice statement, 2005; Scottish Intercollegiate Guidelines Network: SIGN 2004) about appropriate screening strategies that take into account patterns and time course of recurrence in order to allow meaningful therapeutic intervention. For example, given the established risks of breast cancer for young women previously treated with mantle radiation for Hodgkin's lymphoma, the Department of Health in the UK recently advised that all vulnerable patients be recalled for mammography and counselling. In such situations, it is important before initiating the recall to balance the possible risks of breast cancer and treatment options against the anxiety created for women and their partners. The potential benefits of screening (early detection) have to be accompanied by appropriate facilities for psychosocial counselling and guidance.
Many survivors do not follow screening advice as recommended. For example, in a cohort followed-up by Hudson et al. (2002), only 27% performed monthly breast or testicular examination as recommended, although 40% ate nutritious meals and 52% took part in aerobic exercise. Yeazel et al. (2003) reported that only 20.9% of those advised to have a mammogram did so. Self-screening and attendance at recommended screening were higher among well siblings but lower than recommended.
Although the focus has been on screening for physical problems, Recklitis, O’Leary, and Diller (2003) emphasize the potential value of routine screening for psychological problems in annual follow-up visits. They identified significant psychological distress (31.7%) and suicidal symptoms (13.9%) in a population of young people attending follow-up clinic. These authors subsequently showed that depression and suicidal ideation were associated with physical symptoms and disabilities, suggesting a very close link between physical and psychological well-being (Recklitis, Lockwood, Rothwell, & Diller, 2006).
Health Promotion
The association between life-style behaviors and cancer in adults is well-established (American Cancer Society, 2006), raising special concerns about cancer survivors (Emmons et al., 2002). The reasoning is that if smoking is associated with cancer in the general population, it may be as, or more strongly carcinogenic for those who are already vulnerable. Furthermore, regular tobacco use may exacerbate risk of late-effects especially those involving cardiac and pulmonary toxicities (Emmons et al., 2002). Similarly, exposure to ultra-violet light may increase skin cancer risks already heightened by radiotherapy (Corpron et al., 1996).
There have been suggestions that survivors smoke at similar rates compared with the normal population (Haupt et al., 1992; Hollen & Hobbie, 1996; Tyc, Hadley, & Crockett, 2001), though others point to lower frequency (Emmons et al., 2003). Conflicting views have been put forward to account for smoking behavior among survivors. On the one hand, they may smoke less given that they are often ill at an age when most children begin to smoke. On the other hand, they may smoke more than peers, partly as a rebellion after years of treatment, or because they want to be accepted by peers.
Although age of onset for tobacco use in survivors was older compared with population norms (Bauld, Toumbourou, Anderson, Coffey, & Olsson, 2005), attempts to quit were lower (Emmons et al., 2002) and survivors were less successful at quitting as compared with siblings (Haupt et al., 1992; Tao et al., 1998). Cessation rates have been reported as only moderately higher than for the general population (Emmons et al., 2002). Over half (57%) of younger survivors aged 10–18 years reported intentions to use tobacco in the future (Tyc et al., 2006).
Limitations of this work include reliance on self-report data and inevitable concerns that survivors may under-estimate smoking behaviour. Notwithstanding the methodological difficulties, it is important to acknowledge that there is some evidence that prevalence is higher than desirable. Almost all the work is based in the US where there is a significant anti-cancer lobby and smoking is banned in public places. The problem is likely to be more serious for survivors in countries where smoking is generally more accepted (Fong et al., 2004). Provision of health education and interventions to improve life-style behaviors especially smoking must be an integral part of any follow-up service (Bellizzi, Rowland, Jefferry, & McNeel, 2005).
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Conclusions |
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This discussion about the QOL of survivors of childhood cancer would not have been possible 50 years ago. In a relatively short period of time, childhood cancer has changed from a condition that was associated with untimely death for the majority, to one where most can hope for survival and a relatively good chance of a normal QOL. Much of this success can be attributed to parents who agreed for their children to be treated on innovative clinical trials, thus leading to more rapid accumulation of knowledge and advances in care for all. Additional information that can usefully guide development of new, less toxic protocols can also be obtained by systematic and comprehensive review of survivors.
For survivors themselves, the potential benefits of follow-up include opportunities for early detection of recurrence and treatment, as well as acquisition of information about their current and future health. Some also enjoy the chance to meet other patients and staff who helped them during critical stages of their illness. Although both survivors and parents can feel reassured by attendance, more secure, and that they were doing something positive for their health, others may prefer to forget all about it, discontinue follow-up and move on: "At some point I think a line has to be drawn under it- the child is cured"; "if there were any late-effects, we would know by now, therefore it carries less and less weight" (Earle, Davies, Greenfield, Ross, & Eiser, 2005). Too often survivors find that information about future risk is given with inadequate information about susceptibility or what could be done: "I am likely to have an early menopause and so they say to have children earlier rather than later. But I don't have a boyfriend so what can I do?" Sadly, in many cases, information about late-effects is not supported by information about what can be done "they tell you the worst scenario, with no suggested plan" (Earle et al., 2005). This implies that any follow-up clinic needs access to support from social, educational, and vocational services, to help survivors work out practical ways of dealing with any information that challenges their QOL.
Although the goals of follow-up are broadly to enhance QOL in survivors, the relative lack of appropriate measures and concerns that assessment of QOL in clinic will be time-consuming and costly means that little is known about whether or not these goals are achieved. Yet, this information is vital to ensure that survivors’ concerns are addressed, and indeed that attendance does enhance rather than diminish their QOL. QOL measures have been used in clinics for survivors of adult cancers with some success. They are acceptable to patients and can contribute positively to doctor–patient communication (Velikova, Brown, Smith, & Selby, 2002). QOL measures potentially offer a very formal way to work with patients and quantify changes in their QOL. The routine use of survivor-specific measures offers a novel approach to evaluating survivors’ views about clinics although their full potential has yet to be realized.
The impetus for follow-up has come from pediatric oncologists, in large part so as to identify late-effects and inform future protocols. However, psychological and psychiatric problems are found in a minority of survivors (e.g., Recklitis et al., 2006). This points to the need to provide routine psychological assessment as well as screening for physical problems. Recommendations about the frequency and intensity of psychosocial assessment necessary for at-risk survivors, need to be made along similar lines as those described for physical assessments (COG LTFU, 2006; UKCCSG Practice statement 2005; SIGN 2004). It is notable, too, that when asked, survivors themselves emphasize the importance of psychological screening and advice (Earle et al., 2005).
Despite current guidelines and recommendations, many survivors do not receive systematic cancer-targeted follow-up care. Surveys in the UK (Taylor et al., 2004) and US (Oeffinger et al., 2004) have identified the fragmentation of services currently available. Patients treated for benign or Stage 1 tumors or surgery alone tended to be discharged, but 16% of oncologists discharged all patients (Taylor et al., 2004). In the US, Oeffinger et al. (2004) analysed data from the Childhood Cancer Survivor Study (CCSS) group. They found that survivors with high-risk conditions (bone tumor, CNS tumor, Hodgkin's disease, leukemia) were more likely to seek medical care than other survivors, but even so reported less frequent cancer-related contact with longer time since diagnosis. Survivors over 30 years of age, males, those without health insurance, high-risk treatment and lack of concern for the future were all less likely to attend for medical visits. Many survivors were relying on primary care physicians for follow-up, suggesting that improved communication between cancer centre and primary care is vital to increase awareness of late-effects and improve surveillance.
Much of the current work involving survivors has been conducted in the US, and to a lesser extent the UK and other European countries. This raises questions about the relevance in other cultures and settings. It is relatively easy to point to some differences in care between the UK and US. "Lack of insurance" (Zebrack et al., 2004) is not a barrier to access to follow-up in the UK, since follow-up is free. Even so, as reported by Taylor et al. (2004) not all survivors are offered or attend routine follow-up. Apart from the issue of cost, other barriers to attending follow-up include survivors’ lack of knowledge about late-effects, and their anxieties about second cancers and late-effects (Zebrack et al., 2004). These authors also suggest that there are also significant barriers to providing follow-up care from providers themselves, who lack the breadth of training necessary to manage survivors.
Pediatricians involved in caring for children with cancer have always emphasized the need for holistic care, and that cure is about more than physical survival (Craft, 2000; van Eys, 1991). It is important that we do not lose sight of these goals when delivering care to survivors. Furthermore, it is important that this message is communicated to oncologists and other staff involved in delivering care to older survivors who are no longer eligible for treatment in pediatrics departments. A spin-off of this may be more organized and holistic care of survivors of adult cancers.
In the introduction to this article, it was noted that improved survival rates have been attributed in large part to national and international collaboration, which has facilitated research and led to rapid advances in treatment protocols. Similar collaboration is now necessary to increase understanding of physical late-effects, and the psychological consequences associated with surviving a potentially life-threatening disease. There is an urgent need to establish how far life-style interventions to modify risk behavior can protect against the development, or reduce the severity, of late physical effects. The focus of this article has been on survivors, but there is evidence regarding the enormous burden experienced by parents and the family more generally, both during treatment (Manne et al., 1996) and the longer term (Barakat et al., 1997). A question for future research is exactly how family interactions and views of the illness contribute to survivors’ QOL.
Since Mulhern et al. (1998) recognized the potential needs for, and difficulties involved in following-up survivors of childhood cancer, much more has been learned about the wide range of problems that can be experienced, and the time-span over which they can occur. The very impressive gains in survival rates need to be complemented by an organized and evidence-based system of follow-up. For this reason, continued identification of late-effects, and of sub-groups who are especially vulnerable, needs to continue.
Recommendations about frequency and intensity of follow-up also need to take into account characteristics of the population. Young people are a very mobile group, they often have little awareness of their past illness history and may not understand the possible consequences. Adherence to appointments and medical advice is dependent on improving their knowledge of the past as well as possible future consequences of their disease.
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Acknowledgments |
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I would like to acknowledge all members of LEGS (Late-effects Group, Sheffield) for their comments on an earlier draft of this article.
Conflict of Interest: None declared.
Received October 1, 2006; revision received June 3, 2007; accepted June 4, 2007
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