Childhood Cancer Survivorship: Improving Care and Quality of Life

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Proposed follow-up levels for survivors more than 5 years from treatment Wallace, et al. 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.

The limited evidence currently available to address these questions will now be considered. 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. 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. 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.

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Many survivors do not follow screening advice as recommended. For example, in a cohort followed-up by Hudson et al.

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Yeazel et al. Self-screening and attendance at recommended screening were higher among well siblings but lower than recommended. They identified significant psychological distress The association between life-style behaviors and cancer in adults is well-established American Cancer Society, , raising special concerns about cancer survivors Emmons et al. 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. Similarly, exposure to ultra-violet light may increase skin cancer risks already heightened by radiotherapy Corpron et al.

There have been suggestions that survivors smoke at similar rates compared with the normal population Haupt et al. 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. Cessation rates have been reported as only moderately higher than for the general population Emmons et al. 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. 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. But I don't have a boyfriend so what can I do? 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. QOL measures have been used in clinics for survivors of adult cancers with some success.

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QOL measures potentially offer a very formal way to work with patients and quantify changes in their QOL. 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.

This points to the need to provide routine psychological assessment as well as screening for physical problems. It is notable, too, that when asked, survivors themselves emphasize the importance of psychological screening and advice Earle et al.

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Despite current guidelines and recommendations, many survivors do not receive systematic cancer-targeted follow-up care. Surveys in the UK Taylor et al. In the US, Oeffinger et al. 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.

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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. Even so, as reported by Taylor et al. 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, ; van Eys, 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.

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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. Since Mulhern et al. 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. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide.

Sign In or Create an Account. Sign In. Advanced Search. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents. To reach this goal, several barriers need to be surpassed, notably education of survivors and healthcare providers regarding the late effects of cancer treatment; availability of standardized guidelines for follow-up of the survivors in a feasible and practical setting and ongoing communication between the cancer center that provided acute care for the patient and the facility providing follow-up care.

Among the hurdles to guideline development are ongoing changes in pediatric cancer therapy, long latency periods required to evaluate many late effects, the unknown effects of aging, and the multiple factors known to influence cancer-related health risks in patients who received cancer therapy during childhood [ 86 , 91 ]. Despite these challenges, two sets of clinical follow-up guidelines designed to guide care for pediatric cancer survivors have recently been published and are described below. COG recently developed risk-based, exposure-related guidelines Long-Term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers] for use in directing follow-up care for survivors of pediatric malignancies [ 86 ].

The COG-LTFU Guidelines are risk-based, exposure-related clinical practice guidelines for screening and management of late effects resulting from therapeutic exposures used during the treatment of pediatric malignancies. The guidelines are both evidence-based and based on the collective clinical experience of experts matching the magnitude of the risk with the intensity of the screening recommendations. The screening recommendations are provided in these guidelines area consensus statement from a panel of experts in the late effects of pediatric cancer treatment.

The guidelines are therefore organized according to therapeutic agent, and cross-referenced to other topics with related toxicities. The guidelines are designed to standardize and direct follow-up care that facilitates early identification of and intervention for treatment-related complications. Limitations include the potential for false-positive screening evaluations and increased patient anxiety related to an increased awareness of possible complications.

Costs of long-term follow-up care may also be prohibitive for some patients. Goal of implementation of these guidelines is to increase quality of life and decrease complication-related healthcare costs for pediatric cancer survivors by providing standardized and enhanced follow-up care throughout the life span.

Long-Term Survivors of Childhood Cancer: The Late Effects of Therapy

The guidelines are intended for use beginning 2 or more years following the completion of cancer therapy to [ 1 ] promote healthy lifestyles [ 2 ], provide ongoing monitoring of health status [ 3 ], facilitate early identification of late effects, and [ 4 ] provide timely intervention for late effects. The information within these guidelines is important for clinicians e. Figure 1 presents an example model of how these guidelines were developed.

TSH, thyroid-stimulating hormone. The goal of Scottish Intercollegiate Guidelines Network SIGN is to develop evidence-based clinical guidelines aimed at reducing variations in clinical practice and outcomes for patients [ 91 ]. SIGN is composed of members from all medical specialties, nursing, pharmacy, dentistry, allied health professionals, patients, health service managers, social services, and researchers [ 91 ].