Caring for survivors of childhood cancers: The size of the problem

doi:10.1016/j.ejca.2005.11.003

European Journal of Cancer

Volume 42, Issue 4, March 2006, Pages 501-508

https://doi.org/10.1016/j.ejca.2005.11.003 Get rights and content

Abstract

Many survivors of childhood cancer have significant health problems due to their illness or treatment. This population-based study examines the number of long-term survivors, their disabilities and consequent long-term care needs. Survival rates for children diagnosed with cancer between 1960 and 1999 in the West Midlands, United Kingdom (UK), were used to estimate future long-term survivor numbers. Treatment and late effects data on a cohort of patients surviving for more than 5 years were used to consider continuing care needs. Between the 1960s and 1990s, 5-year survival increased from 23% to 70%. There were 98 5-year survivors in 1970, and numbers may exceed 2100 by the end of 2005. Most (at least 61%) survivors in the West Midlands Region have one or more chronic medical problems and may require multidisciplinary care. We conclude that, in order to determine how to provide cost-effective care for this increasing population, protocol delivered management with audit is needed.

Introduction

Approximately 70% of children diagnosed with cancer now have long-term survival prospects¹ resulting from advances in chemotherapy, paediatric surgery, radiotherapy, supportive care and treatment at specialist paediatric oncology centres with inclusion in clinical trials. The proportion of children referred to the UK’s 22 paediatric oncology centres rose between 1977 and 1984 from 44% to 71%.² This had a significant impact on survival, particularly for patients with acute lymphoblastic leukaemia, non-Hodgkin’s lymphoma, Ewing’s sarcoma, rhabdomyosarcoma and osteosarcoma.² Also, the number of patients entered into clinical trials increased. The first national trials for leukaemia began in 1969, and following the formation of the United Kingdom Children’s Cancer Study Group (UKCCSG) in 1977, the number of trials for patients with other types of cancer rose sharply.

Results from the Manchester Children’s Tumour Registry³ and the Northern Region Young Persons’ Malignant Disease Registry⁴ have demonstrated striking improvements in survival over time, but do not describe the numbers and health status of the survivors.

A previous audit of 290 adult survivors attending our centre for follow-up revealed that chronic medical problems were present in 58% of patients.⁵ Such problems may not be detected until many years after the completion of treatment.⁶

This large population-based study examines survival trends for patients diagnosed between 1960 and 1999 in the West Midlands Health Region (population in 2001 5.2 million,⁷ approximately 9% of the UK population) and describes a current group of long-term survivors (defined as alive 5 years after diagnosis) with respect to their number, characteristics and likely requirement for ongoing medical care.

Section snippets

Methods

The West Midlands Regional Children’s Tumour Registry (WMRCTR) provided data on all children aged 0–14 years, resident in the West Midlands and diagnosed with malignant disease (or a benign brain/central nervous system (CNS) tumour) between 1960 and 1999. Diagnoses were considered to be generally reliable following a pathology review of solid and brain tumour cases diagnosed between 1957 and 1992.⁸

Trends in survival, for all cancers and specific tumour groups, were examined for four successive

Survival

Survival for all cancers combined improved substantially over the 40-year period (Fig. 1) and 70% (95% confidence interval (CI) 67–72%) of patients diagnosed in 1990–1999 can expect to survive for 5 years or more. Table 1 shows how survival has improved over time for different tumour types.

Survivors

Fig. 2 illustrates the growing number of long-term survivors between 1980 and 2005. The derivation of the number of survivors expected in 2005 is shown in Table 2. The curve for the observed number of

Discussion

During 1960–1999 5022 children resident in the West Midlands were diagnosed with cancer and by 2000 1747 of them were long-term (>5 years) survivors. The actuarial 5-year survival rates rose from 23% (95% CI 20–25%) for those diagnosed in the 1960s to 70% (95% CI 67–72%) for those diagnosed in the 1990s. Consequently, both the proportion of children surviving and their cumulative numbers increased steadily over time.

Based on current incidence and survival data the estimated number of long-term

Conflict of interest statement

None declared.

Acknowledgements

We thank the West Midlands Regional Cancer Registry (now the West Midlands Cancer Intelligence Unit) and the Childhood Cancer Research Group for access to data. We also thank our consultant colleagues and numerous medical records officers, consultants and general practitioners for access to patient records.

This study was supported by the West Midlands Regional Health Authority, the Special Trustees of the Former United Birmingham Hospitals and the Department of Health.

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Caring for survivors of childhood cancers: The size of the problem

Abstract

Introduction

Section snippets

Methods

Survival

Survivors

Discussion

Conflict of interest statement

Acknowledgements

Curr Opin Pediatr

Eur J Cancer

Developing strategies for long-term follow-up of survivors of childhood cancer

BMJ

Centralisation of treatment and survival rates for cancer

Arch Dis Child

Improvements in survival from childhood cancer: results of a population based survey over 30 years

BMJ

Incidence and survival for cancer in children and young adults in the North of England, 1968–1995: a report from the Northern Region Young Persons’ Malignant Disease Registry

Br J Cancer

The health status of adult survivors of cancer in childhood

Eur J Cancer

Long-term survivors of childhood cancer: the late effects of therapy

Oncologist

The need for specialist review of pathology in paediatric cancer

Br J Cancer

Late mortality experience in five-year survivors of childhood and adolescent cancer: the childhood cancer survivor study

J Clin Oncol

Transition to adult health care for adolescents and young adults with cancer

Cancer