Long‐term follow‐up of survivors of childhood cancer in the UK

Taylor, Aliki; Hawkins, Mike; Griffiths, A.; Davies, Helena; Douglas, C; Jenney, Meriel; Wallace, W. Hamish B.; Levitt, Gill

doi:10.1002/pbc.10482

Cited by 88 publications

(65 citation statements)

References 26 publications

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“…Of those, 93% exclusively involved a pediatric oncologist, 13% included a medical oncologist, and 8% included an adult-oriented primary care provider. In the United Kingdom, Taylor et al 51 surveyed 22 institutions and found that 52% of pediatric oncologists reported following up with their patients for life, whereas 45% discharge at least some for continued follow-up, usually with a general practitioner. In France, Tabone et al 52 conducted a survey of 40 pediatric oncologists in 28 centers.…”

Section: Current Practices In Transitional Carementioning

confidence: 99%

Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Freyer

2010

JCO

158

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A B S T R A C T PurposeYoung adult survivors of childhood and adolescent cancer are an ever-growing population of patients, many of whom remain at lifelong risk for potentially serious complications of their cancer therapy. Yet research shows that many of these older survivors have deficient health-related knowledge and are not engaging in recommended health promotion and screening practices that could improve their long-term outcomes. The purpose of this review is to address these disparities by discussing how formal transition of care from pediatric to adult-focused survivorship services may help meet the unique medical, developmental, and psychosocial challenges of these young adults. DesignLiterature review and discussion. ResultsThis article summarizes current research documenting the medical needs of young adult survivors, their suboptimal compliance with recommended follow-up, and the rationale, essential functions, current models, and innovative approaches for transition of follow-up care. ConclusionSystematic health care transition constitutes the standard of care for young adult survivors of childhood cancer. In developing a transitional care program, it is necessary to consider the scope of services to be provided, available resources, and other local exigencies that help determine the optimal model for use. Additional research is needed to improve health services delivery to this population. Effective advocacy is needed, particularly in the United States, to ensure the availability of uninterrupted health insurance coverage for survivorship services in young adulthood.

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Section: Current Practices In Transitional Carementioning

confidence: 99%

Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Freyer

2010

JCO

158

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“…Survivors seen in long-term followup clinics have been found to be unrepresentative of the entire population of survivors. 27 This study also had the advantage of a representative range of childhood cancer types. Previous studies have had limited numbers of specific childhood cancer types, in particular numbers of leukemia survivors in older studies tend to be very limited.…”

Section: Study Strengths and Weaknessesmentioning

confidence: 99%

Long‐term population‐based marriage rates among adult survivors of childhood cancer in Britain

Frobisher

Lancashire

Winter

et al. 2007

Intl Journal of Cancer

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The objectives of this study were to assess the number of adult survivors of childhood cancer who ever married and the factors influencing marriage, compare observed marriages to those expected from the general population, and assess age at marriage and influencing factors. The data is based on the British Childhood Cancer Survivor Study (BCCSS), which is a populationbased cohort of 18,119 individuals who were diagnosed with childhood cancer between 1940 and 91 and survived at least 5 years. Fourteen thousand five hundred thirty-nine were alive, aged at least 16 years and eligible to receive a postal questionnaire, which ascertained marriage status. Thirty-four percent of 9,954 survivors had married. Survivors with the following characteristics: males, CNS neoplasm, received radiotherapy, diagnosed with mental retardation, registered blind, low social functioning score (calculated from SF-36 health status measure), and achieved the highest level of educational attainment, were less likely to have married than the complementary survivor groups. The deficits in the proportion ever married compared to the general population were mostly between 9 and 18% among males and 7-10% among females. The largest ever married deficits were among male CNS neoplasm survivors aged 30 years or over (29-38%). Age at first marriage among survivors was related to: sex, childhood cancer type, age at diagnosis, chemotherapy, radiotherapy, mental retardation, and level of educational attainment. Regular follow-up for these survivors should address not just physical late-effects of the childhood cancer and treatment, but also psychosocial needs throughout the lifespan of the survivors to help them achieve life events as they occur in the general population. ' 2007 Wiley-Liss, Inc.Key words: childhood cancer; marriage; late effects; survivorship The survival rates for childhood cancer have increased considerably over the last 40 years. 1 The long term physical, psychological and social consequences of childhood cancer and its treatment have been increasingly investigated in survivors. 2,3 One important outcome is the likelihood that survivors form relationships, and in particular live with a partner or marry.Marriage rates have been found to be lower in adult survivors of childhood cancer than those in control subjects. 4-7 Male survivors appear less likely to marry than female survivors. 4,6,8,9 Also survivors of a central nervous system (CNS) neoplasm have been found to marry less frequently than those of other cancer types, 6 especially in males. 4,10,11 Other factors related to the likelihood of marriage among childhood cancer survivors have been suggested, including age at diagnosis, 4,6,9 exposure to radiotherapy, 4 income 4 and educational attainment. 4,8 Adult survivors of childhood cancer have been found to delay marriage 5,12 ; and to be living more often with their parents. 6 In particular, those who had a CNS neoplasm during childhood were found to be older at first marriage than sibling controls. 4 Unfortunately, all previous...

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“…(21) Our results showed that similar to the UK and US, general practitioners were frequently involved in long-term care of childhood cancer survivors and saw the largest number of patients (n=164, 26%). (11,22) Thus, a follow-up model with general practitioners as gatekeepers transferring patients to specialists may cover best the needs of a majority of patients. However, preferences and views of survivors and physicians, as well as specific features of the health system need to be considered.…”

Section: Health Professionals Involved In Follow-upmentioning

confidence: 99%

“…Studies in the US, UK and Canada reported that contrary to recommendations, only one third of survivors received regular long-term follow-up. (11)(12)(13) In Switzerland and elsewhere, the implementation of follow-up programs for long-term survivors remains a challenge. The Swiss Paediatric Oncology Group (SPOG) has published recommendations for a standardized assessment of late effects in 1996 suggesting to involve medical oncologists and general practitioners to assure a seamless transition from paediatric to adult care.…”

Section: Introductionmentioning

confidence: 99%

Follow-up care amongst long-term childhood cancer survivors: A report from the Swiss Childhood Cancer Survivor Study

Rebholz

Weid

Michel

et al. 2011

European Journal of Cancer

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In the Swiss Childhood Cancer Survivor Study, we aimed to assess the proportion of long-term survivors attending follow-up care, to characterise attendees and to describe the health professionals involved. We sent a questionnaire to 1252 patients, of whom 985 (79%) responded, aged in average 27years (range 20-49). Overall, 183 (19%) reported regular, 405 (41%) irregular and 394 (40%) no follow-up. For 344, severity of late effects had been classified in a previous medical examination. Only 17% and 32% of survivors with moderate and severe late effects respectively had made regular visits a decade later. Female gender, after a shorter time since diagnosis, had radiotherapy, and having suffered a relapse predicted follow-up. In the past year, 8% had seen a general practitioner only, 10% a paediatric or adult oncologist and 16% other health specialists for a cancer related problem. These findings underline the necessity to implement tailored national follow-up programmes. Only 17% and 32% of survivors with moderate and severe late effects respectively had regular visits a decade later. Female gender, a shorter time since diagnosis, radiotherapy, and having suffered a relapse predicted follow-up. In the past year, 8%had seen a general practitioner only, 10% a paediatric or adult oncologist and 16%other health specialists for a cancer related problem. These findings underline the necessity to implement tailored national follow-up programs.

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Long‐term follow‐up of survivors of childhood cancer in the UK

Cited by 88 publications

References 26 publications

Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Long‐term population‐based marriage rates among adult survivors of childhood cancer in Britain

Follow-up care amongst long-term childhood cancer survivors: A report from the Swiss Childhood Cancer Survivor Study

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