Models of care for survivors of childhood cancer

With improvements in therapy for childhood cancer, the expectation that most childhood cancer patients will survive and enter adulthood is a reality. There is clear evidence that survivors are at risk for adverse health-related long-term sequelae associated with their cancer and its treatment, requiring appropriate health care resources. What is less clear is how this health care should optimally be delivered. We review the functional and operational needs for long-term follow-up for childhood cancer survivors and present alternatives for models of care. Programs for childhood cancer survivors should provide mechanisms for monitoring and management of late effects, as well as support and advocacy for addressing psychosocial issues, health education, and assistance with financial concerns. Access to research is an important component as clinical care and research are integrally related. A multidisciplinary model that provides continuity of care throughout the disease course is optimal, providing transitions from acute anti-neoplastic therapy to follow-up and primary care, as well as from pediatric care to adult-oriented care. There is no single best model of care for all childhood cancer survivors. In evaluating different models, considerations include available resources as well as the particular cancer population being served. Not all survivors require the same level of services and the service level requirement for individual patients may change with time. As outcome research progresses for childhood cancer survivors, methodological issues of optimal health care delivery for this population deserve to be the subject of such research.     

Survey of childhood cancer survivors who stopped follow‐up physician visits

Background: Childhood cancer cure rates have increased remarkably; however, survivors face an increased risk of morbidity and mortality. Survivors may benefit from anticipatory guidance and periodic surveillance to minimize morbidity and mortality. Methods: Subjects included 114 5‐year survivors of childhood cancer who were diagnosed and treated in three hospitals in Nagoya between 1975 and 2001 and who stopped follow‐up physician visits during the preceding 2 years. We conducted a survey of their socioeconomic status, knowledge about their diagnosis and late effects of treatment received, and current hospital attendance patterns. Results: Eighty‐eight of 114 subjects replied. Sixty‐six survivors knew about their disease, but only 26 knew about possible late effects of cancer treatment. Although 78 respondents indicated they were healthy and had no trouble in their daily lives, 46 had at least one chronic condition. In response to the question regarding why they did not visit the hospital regularly, many subjects responded that the physician‐in‐charge told them they did not need to visit the hospital anymore; others thought it was unnecessary to consult a physician because they were in good health. Conclusions: Some cancer survivors who stop follow‐up physician visits may still be suffering from cancer‐related illnesses. Both survivor‐related and physician‐related barriers contribute to cancer survivors stopping follow‐up physician visits. To ensure that survivors undergo appropriate follow‐up visits, it is necessary to educate survivors, their families, and medical staff about the late effects of cancer and its treatment and the importance of long‐term follow up.     

A systematic review of models of care for the follow‐up of childhood cancer survivors

Follow‐up care for survivors of childhood cancer is increasingly seen as a priority service as numbers of survivors increase. Despite this there are few published evaluations of the available options. We conducted a systematic review of published and unpublished literature. Seven uncontrolled studies, and one comparative study of a related intervention, were identified. Observational data suggest that follow‐up care was useful even for patients who did not perceive this as a need. Suitably powered, well‐conducted, controlled trials of adequate duration that directly compare follow‐up models are required to provide robust evidence on the optimal care for these patients. Pediatr Blood Cancer 2013; 60: 351–356. © 2012 Wiley Periodicals, Inc.     

Health-risk behaviours among adolescent survivors of childhood cancer

BACKGROUND: The purpose of the study was to investigate smoking, alcohol use, illicit drug use and sexual risk taking among adolescent survivors of childhood cancer treated in Australia. PROCEDURE: A comparison study selecting on exposure (cancer vs. healthy) and administering a branched computerised questionnaire assessing health-risk behaviour, predominately by telephone interview. One hundred fifty-three adolescent survivors of childhood cancer were compared with age matched healthy adolescents drawn from one of two Australian population based surveys of adolescent health. Behaviours assessed were tobacco use, alcohol use, binge drinking, cannabis use, pain reliever use, other illicit drug use and unprotected sex. RESULTS: Compared to their healthy peers, younger survivors (13- to 17-years) were at an increased risk of reporting pain reliever use (OR = 2.1) for non-medical purposes, but lower risk of binge drinking (OR = 0.20), cannabis use (OR = 0.25), other illicit drug use (OR = 0.31), tobacco use (OR = 0.38) and alcohol use (OR = 0.44). Older survivors (18- to 24-years) were at an increased risk of reporting alcohol use (OR 1.5), but at lower risk of reporting cannabis use (OR = 0.27), other illicit drug use (OR = 0.44) and tobacco use (OR = 0.47). Survival analysis using the full adolescent survivor cohort (13- to 24-years) showed that the age of onset of tobacco use was later for cancer survivors (hazard ratio HR = 0.65). CONCLUSION: Adolescent cancer survivors show reduced involvement in most health-risk behaviours, with the exception of pain reliever use among younger survivors and alcohol use among the older survivors. Although risks were reduced a substantial proportion of survivors engage in these behaviours.     

A questionnaire based review of long-term follow-up programs for survivors of childhood cancer in Canada

Background

Major advances have been made in the treatment of childhood cancer; however, survivors of childhood cancer are at increased risk for morbidity and mortality. There is little literature regarding available long‐term follow‐up programs for survivors of childhood cancer.

Procedure

In March 2007, 16 surveys were sent to pediatric hematology/oncology programs across Canada to determine what programs were available for survivors of childhood cancer, and the nature of such programs.

Results

Of 15 participating centers, 13 (87%) have multi‐disciplinary programs for the long‐term follow‐up of pediatric cancer survivors. Research databases were documented in 9/15 (60%) of centers to document late effects. Dedicated programs for adult survivors of childhood cancer were established in 8/15 (53%) of centers. Access to subspecialty care for survivors was rated as quite good. Concerns were raised by many participants about patients being lost to follow‐up. Respondents indicated that primary care physicians appear to be under‐represented within dedicated long‐term follow‐up programs.

Conclusion

Long‐term follow‐up programs for survivors of childhood cancer are available in 87% of Canadian pediatric oncology centers. While programs reported good access to care for childhood survivors, many adult survivors of childhood cancer have more limited timely access to services and patients are often lost to follow‐up. New models of care incorporating primary care physicians are necessary due to growing numbers of survivors. Pediatr Blood Cancer 2009;52:113–115. © 2008 Wiley‐Liss, Inc.     

The views of European clinicians on guidelines for long‐term follow‐up of childhood cancer survivors

Background

Evidence‐based guidelines are needed to guide effective long‐term follow‐up (LTFU) of childhood cancer survivors (CCS) at risk of late adverse effects (LAEs). We aimed to ascertain the use of LTFU guidelines throughout Europe, and seek views on the need for pan‐European LTFU guidelines.

Procedures

One expert clinician from each of 44 European countries was invited to participate in an online survey. Information was sought regarding the use and content of LTFU guidelines in the respondent's centre and country, and their views about developing pan‐European LTFU guidelines.

Results

Thirty‐one countries (70%) responded, including 24 of 26 full EU countries (92%). LTFU guidelines were implemented nationally in 17 countries (55%). All guidelines included recommendations about physical LAEs, specific risk groups and frequency of surveillance, and the majority about psychosocial LAEs (70%), and healthy lifestyle promotion (65%). A minority of guidelines described recommendations about transition to age‐appropriate LTFU services (22%), where LTFU should be performed (22%) and by whom (30%). Most respondents (94%) agreed on the need for pan‐European LTFU guidelines, specifically including recommendations about surveillance for specific physical LAEs (97%), action to be taken if a specific LAE is detected (90%), minimum requirements for LTFU (93%), transition and health promotion (both 87%).

Conclusions

Guidelines are not universally used throughout Europe. However, there is strong support for developing pan‐European LTFU guidelines for CCS. PanCareSurFup ( www.pancare.eu ) will collaborate with partners to develop such guidelines, including recommendations for hitherto relatively neglected topics, such as minimum LTFU requirements, transition and health promotion. Pediatr Blood Cancer 2015;62:322–328. © 2014 Wiley Periodicals, Inc.     

Medical visits of childhood cancer survivors in Japan: A cross‐sectional survey

Background: Although more children with cancer continue to be cured, these survivors experience various late effects. Details of the medical visit behaviors of childhood cancer survivors (CCS) in adulthood remain to be elucidated. Methods: In order to examine medical visits in the past and future of CCS, we performed a cross‐sectional survey with self‐rating questionnaires on medical visits of CCS compared with control groups (their siblings and the general population). Results: Questionnaires were completed by 185 CCS, 72 of their siblings and 1000 subjects from the general population and the results were analyzed. Mean ages at this survey and the duration after therapy completions of CCS were 23 and 12 years, respectively. We found that the previous treatment hospitals (where CCS were treated for their cancer) were the most commonly visited medical facilities for the CCS group (74% for female patients and 64% for male patients) and more than half of the CCS preferred to continue visiting the previous treatment hospital with enough satisfaction in Japan. The multivariate analysis showed that female sex and relapse were significantly associated with the past visits to the previous treatment hospital and that the CCS with brain tumors or bone/soft tissue sarcomas and CCS with any late effects tended to continue the relationships with the hospital. In addition female sex was also significantly associated with desired future visits to the previous treatment hospital. On the other hand, the married CCS tended to be disinclined to visit the hospital it in the future. Conclusions: In order to optimize risk‐based care and promote health for CCS after adulthood, we should discuss the medical transition with CCS and their parents.     

Health promotion for adolescent childhood leukemia survivors: Building on prevention science and ehealth

Teenage survivors of childhood acute lymphoblastic leukemia (ALL) have increased morbidity likely due to their prior multicomponent treatment. Habits established in adolescence can impact individuals' subsequent adult behaviors. Accordingly, healthy lifestyles, avoiding harmful actions, and appropriate disease surveillance are of heightened importance among teenage survivors. We review the findings from prevention science and their relevance to heath promotion. The capabilities and current uses of eHealth components including e‐learning, serious video games, exergaming, behavior tracking, individual messaging, and social networking are briefly presented. The health promotion needs of adolescent survivors are aligned with those eHealth aspects to propose a new paradigm to enhance the wellbeing of adolescent ALL survivors. Pediatr Blood Cancer 2013; 60: 905–910. © 2012 Wiley Periodicals, Inc.     

Early‐onset colorectal cancer in young adult survivors of childhood cancer

We describe the cases of two childhood cancer survivors (CCS) who developed colorectal cancer at 21 and 30 years of age. They had been treated with 30 Gy abdominal irradiation and chemotherapy including platinum and high‐dose alkylating agents at age 1 year, and 12 Gy total body irradiation and high‐dose cyclophosphamide at age 15 years, respectively. Both had not been screened for colorectal cancer. One patient with advanced cancer died, whereas the other with early cancer was still alive at the time of writing. Two guidelines for long‐term follow‐up of CCS recommend that CCS who had >30 Gy irradiation receive periodic check‐ups at age ≥ 35 years. The present cases suggest that CCS, even with irradiation <30 Gy, should receive earlier check‐ups for colorectal cancer. © 2016 Japan Pediatric Society     

Follow‐up of adolescents born extremely preterm: cognitive function and health at 18 years of age

Aim: To compare cognitive ability, school achievement and self‐perceived health aspects in adolescents born extremely preterm and term born controls. Method: Fifty‐two, out of 61, extremely preterm born adolescents (mean age 18.4 years) and 54 matched controls (mean age 18.3 years) born at full term were investigated; intelligence quotient was measured with the Wechsler Adult Intelligence Scale; cognitive flexibility, i.e. a measure of visuomotor speed and attention, with the Trail Making Test; school achievement and choice of upper secondary programmes were reported. Health aspects were investigated in a semi structured interview. Result: The adolescents born prematurely had significantly lower IQ than the controls, mean 93 (SD 15.4) vs 106 (12.5), p < 0.001; showed slower visuomotor speed; had lower grades from compulsory school (192.7 vs 234.8, p < 0.001); and chose to a greater extent practical upper secondary school programmes. There were no differences between the groups in health care consumption, prevalence of chronic disease, allergy or infectious diseases. Conclusion: Poorer cognitive performance, in extremely preterm born individuals, seems to persist into late adolescence. Fewer prematurely born than control chose theoretical upper secondary school programmes. However, no difference was noted regarding self‐perceived health aspects.