Transitional care for young adult survivors of childhood cancer

OBJECTIVES: To review the obstacles and barriers to providing optimal care to young adult cancer survivors and discuss the transition from pediatric to adult health care system. DATA SOURCES: Published articles and textbook chapters. CONCLUSIONS: More than 70% of children diagnosed with cancer between birth and 14 years of age will be cured of their primary disease. Because of multiple physical and psychosocial risk factors imposed by their therapy and previous disease, childhood cancer survivors require life-long care. IMPLICATIONS FOR NURSING PRACTICE: Health care providers must be aware of the unique needs of these individuals for life-long follow-up and assist in facilitating this transition process.     

Recognizing health risks in childhood cancer survivors

PURPOSE: To provide information about the special health needs of childhood cancer survivors through a discussion of Wilms' tumor, a common childhood renal tumor, and case studies of two survivors of Wilms' tumor, who encountered significant health problems as adults. This information may be generalized to many cancer survivors. DATA SOURCES: Actual case studies as well as extensive review of the current literature on childhood cancer survivorship. CONCLUSIONS: Adult healthcare practitioners may help to decrease morbidity of childhood cancer survivors in adulthood when they are knowledgeable about the risks of this population. Resources are readily available, both in the medical literature and on the Internet. IMPLICATIONS FOR PRACTICE: With well-established success in the treatment of childhood cancer, there are many young and middle-aged adult survivors of the disease. However, as many as two-thirds of survivors may have chronic long-term effects of treatment. Most survivors eventually discontinue follow-up with their pediatric oncologists and receive primary health care from adult providers, many of whom are unaware of survivors' health risks. Awareness of primary care providers regarding the special health needs of childhood cancer survivors is critical to decrease morbidity and improve quality of life. The ever-increasing number of childhood cancer survivors is creating a public health issue as they transition into adulthood.     

Evaluation of a screening programme for psychological distress in cancer survivors

Purpose

This study is aimed at evaluating the feasibility of a screening procedure for psychological distress in cancer survivors.

Methods

Consecutive series of 339 cancer patients from three centres were requested to fill in two questionnaires measuring psychological distress (PDI) and social support (MOSS). Psychological intervention was offered to patients with significant degree of distress.

Results

Most patients accepted to be screened (72.0%; n?=?244), and a subgroup (16.0%) showed high psychological distress. A higher ratio of distressed patients was observed among those with lower social support (P?=?0.017). A significant (P?<?0.01) negative correlation between psychological distress and social support was observed. A psychological intervention was offered to patients with high psychological distress, but only 15.6% completed it.

Conclusions

Results from this study provide both some insights into the characteristics of psychological distress and some input on issues that may arise when implementing a screening procedure for psychological distress in cancer survivors. Further research is needed to assess both the clinical significance of distress and the most appropriate tools to carry out screening procedures within the target population.     

Self-reported psychosocial wellbeing of adolescent childhood cancer survivors

PurposeTo describe self-reported psychosocial wellbeing of adolescent childhood cancer survivors (CCS) compared with a control group of their peers.MethodsIn this case–control study, 170 CCS aged 12–18 years completed an internet survey. The survey was a modified version of the Youth’07 Health and Wellbeing Survey of Secondary School Students in New Zealand. The control group (historical comparison) were the 9107 Youth’07 survey participants. Psychosocial wellbeing was assessed by measures of a) wellbeing (WHO-5), b) anxiety (MASC-10), c) depression (RADS2-SF) and d) emotional and behavioural difficulties (SDQ).ResultsThe majority of CCS scored within the normal range across all four measures: wellbeing (89%), anxiety (93%), depression (94%) and emotional and behavioural difficulties (82%), leaving a small but important minority of CCS reporting significant clinical issues. Compared to their peers, adolescent CCS were no more likely to have an abnormal score for any of the psychosocial measures, and less likely to report abnormal psychosocial wellbeing (OR = 0.44, p = 0.0003) and prosocial behaviour problems (OR = 0.53, p = 0.009). Survivors of central nervous system tumours, older age, older age at diagnosis, and lower socioeconomic status were associated with some psychosocial difficulty.ConclusionsFollowing a diagnosis of childhood cancer, intensive therapy, and the subsequent risk of adverse health outcomes, one might expect CCS to be doing less well than their peers in terms of psychosocial wellbeing. The findings of this study, however, show that CCS are doing as well, and in some respects better, than their peers.     

Evaluation of a 12-week home-based walking intervention for breast cancer survivors

Goals of work To evaluate a 12-week home-based walking intervention among breast cancer survivors and to quantify changes in physical activity (PA) behaviors, body weight, and body composition in response to the intervention. Patients and methods Breast cancer survivors that were in the posttreatment period were randomized to intervention (n=23) or wait-list usual care (n=13). PA was assessed by self-report, and in a study subsample (n=23), by an accelerometer. Intention to treat principles were employed to estimate the intervention effect on PA behaviors, body weight, and body composition. Intervention adherence was calculated as the proportion of exercise sessions completed relative to the number of exercise sessions recommended, as reported each week on walking logs. Main results Thirty-four of 36 women randomized (94%) completed the study. Average intervention adherence over 12 weeks was 94%. Intervention participants reported a significantly greater increase in walking for exercise [+11.9 metabolic equivalent (MET)-h/week] over time than did usual care participants (+1.7 MET-h/week, p=0.01). Objective measures of activity also indicated that intervention participants increased their activity levels over time as compared to usual care participants [i.e., counts/min/day and steps/day (p≤0.04)]. No significant changes in body weight or composition were observed. Conclusion We found that a 12-week home-based walking intervention was safe and effective for increasing short-term PA levels in breast cancer survivors. Future studies are needed to assess the ability of brief interventions to facilitate the maintenance of increased activity levels and to produce favorable quality of life and risk factor outcomes.     

Natural course of HCV infection in childhood cancer survivors

Goals of work

To describe the course of hepatitis C in a cohort of 105 survivors after childhood cancer.

Patients and methods

Data on chemo/radiotherapy, clinical status, serial alanine aminotransferase (ALT) evaluation, and virological parameters after the end of treatment were collected for each patient. Liver biopsies, when performed, were centrally evaluated by a pathologist.

Main results

All patients were alive at the end of follow-up and did not show hepatic insufficiency. ALT evaluation along the entire follow-up showed a moderate (87%) or a remarkable (13%) cytolytic pattern. Young age at diagnosis, hematopoietic stem cell transplantation, and duration of infection significantly correlate with a worse hepatic activity. Type of tumor and chemo and/or radiotherapy regimens did not influence the pattern of hepatic cytolysis. Liver biopsy, centrally reviewed in 30% of the cohort, showed one case of cirrhosis and mild fibrosis in 71% of the group. Higher degrees of fibrosis did not seem to be related to any exposition to chemo/radiotherapy but correlated significantly with the more remarkable cytolytic course.

Conclusions

The outcome of hepatitis C in our patients is comparable to the one described in European cohorts of adult cancer survivors and perinatally infected subjects. Nevertheless, progression to high degrees of hepatic damage has to be monitored by a careful follow-up.     

A model of care for childhood cancer survivors that facilitates research.

The majority of children and adolescents diagnosed with cancer will achieve long-term survival after contemporary therapy. Consequent to this success are challenges inherent in coordinating lifelong health care for a group predisposed to a variety of cancer-related complications. With increasing numbers of aging adult survivors of childhood cancer, clinicians now face the additional challenge of studying delayed effects of childhood cancer in the context of organ senescence. Clinicians must also address the transition of survivor health care from the pediatric oncology setting to the adult community. Salient issues influencing health care of long-term childhood cancer survivors are summarized, and a model for monitoring late treatment effects used at a pediatric cancer facility is presented. This model is remarkable for its ability to enhance optimal delivery of long-term survivor care, facilitate the transition of survivor care from the pediatric treatment center to community, providers, and support investigations of late cancer-related morbidity and mortality.     

The lived experience of adult survivors of childhood cancer.

Little is known about the long-term impact of surviving childhood cancer. Most children diagnosed with cancer now survive into adulthood due to advances in medical treatment. Although the number of survivors of childhood cancer has increased, a review of the literature revealed a paucity of studies that explores survivorship of childhood cancer from the perspective of the adult survivor. The purpose of this phenomenological study was to examine the lived experience of 12 adults who survived childhood cancer. This research methodology allows the meaning or essences of experiences that occurred to be uncovered. Four themes emerged from these data: (1) ongoing consequences for having had cancer, (2) living with uncertainty, (3) the cancer experience is embodied into one's present sense of self, and (4) support is valued. The results of this study demonstrate that a childhood cancer experience affects the life of each survivor, which results in specific health care needs. This knowledge is important as the number of survivors increases. Knowledge of their concerns is imperative prior to providing appropriate health care.     

Insomnia in adult survivors of childhood cancer: a report from project REACH

Purpose

Insomnia is a common problem affecting cancer survivors even years after completion of therapy. Childhood cancer survivors may be at particular risk due to vulnerability to the effects of treatment and medical late effects which impact normal sleep development. Using an indicator of clinically significant insomnia (sleep efficiency), we examined a group of adult survivors of childhood cancer to (1) describe clinical insomnia rates, (2) identify physical and psychological correlates of insomnia, and (3) investigate the frequency with which sleep issues were evaluated during a cancer survivorship medical visit.

Methods

A total of 122 adult survivors of childhood cancer completed standard measures of sleep, psychological distress, and health-related quality of life. Medical records of the 75 survivors with a survivorship medical visit on the day of self-report measure completion were reviewed for documentation of sleep-related issues.

Results

Twenty-eight percent of participants endorsed sleep efficiency below 85 %, indicating clinically significant insomnia. Insomnia was associated with poor physical health and anxiety but not with demographic or cancer treatment variables. Medical providers failed to document sleep in visit notes for 67 % of patients with self-reported insomnia.

Conclusions

A significant proportion of adult survivors of childhood cancer report insomnia, which is associated with physical and psychological health. Few survivors with insomnia discuss this issue with oncology providers during survivorship care. There is a clear need to screen for insomnia in this population. Patients and providers should take greater responsibility for discussing sleep issues and seeking out proper treatment referrals when it is identified.