Understanding the endocrinopathies associated with the treatment of childhood cancer: part 2.

This is part 2 of an article exploring the endocrinopathies associated with cancer treatments, a growing area of care. More than 80% of all childhood cancers are treatable and the number of survivors of childhood cancer is increasing, but up to two thirds of these children reportedly present with significant health problems resulting from their treatments and about 25% of survivors have endocrine problems. This article explains how an understanding of oncology and endocrinology enables nurse specialists to educate young people about their past treatment, and its implications for their current and future health. It focuses on the specific endocrine risks to survivors of childhood cancer following treatment with chemotherapy and radiotherapy. This is the final article in a series that has illustrated the breadth of work undertaken by nurse specialists in endocrinology and oncology.

Understanding the endocrinopathies associated with the treatment of childhood cancer: part 1.

This article explores endocrinopathies associated with late effects of treatments for childhood cancers. It is the first of two articles on the subject, the second to be published in November. This is a growing area of care, as more than 80% of all childhood cancer is treatable, resulting in an increase in survivors of childhood cancer. However, up to two thirds of these children are reported to present with significant health problems resulting from their treatments, and approximately 25% of survivors have endocrine problems. This article explains how an understanding of oncology and endocrinology enables nurse specialists to educate young people about their past treatment and its implications for their health. This knowledge is the foundation for individually-tailored care plans that enable young people to be confident to self-care and self-monitor their long-term health.

Comparison of self-reported late effects with medical records among survivors of childhood cancer.

BACKGROUND: Survival rates following childhood cancer have increased, but survivors experience significant late effects. Long-term follow-up is recommended but imposes an increasing burden on health services. We report prevalence of morbidity in a cohort of survivors from South Yorkshire based on: (i) case-note analysis and (ii) self-reported late effects (parent-reported for under-16s). METHODS: Treatment information was taken from case-notes. Comparisons were made between late effects described in notes and reported by 108 survivors aged >16 years, and 45 parents of survivors (12-15 years). FINDINGS: Of 892 patients diagnosed with childhood cancer and some benign conditions registered on hospital databases from January 1990 to December 2005, 337 (37.8%) met eligibility criteria. Ninety-one survivors (16) (84.3%, confidence interval [CI]: 76.0-90.6) reported one or more late effects (mean=3.5; CI: 3.0-4.1), significantly higher than the number of late effects documented in medical notes (mean=0.7; CI: 0.5-0.9; t=-11.26, p<0.001). Thirty-five parents (77.8%, CI: 65.1-90.4) reported late effects for their children (mean=2.7; CI: 2.0-3.4), again higher than medical notes (mean=0.7; CI: 0.4-1.1; t=7.18, p<0.001). More than 30 specialties were involved in survivor care (mean=1.5; CI: 1.4-1.6; range 0-6). Those with more late effects saw more specialties (r=0.51, p<0.001). INTERPRETATION: We confirm the wide range of late effects experienced by survivors of child cancer, significantly greater than those recorded in medical notes, and requiring care from a range of specialties. Decisions about follow-up need to take account of patient-reported morbidity and concerns.

Follow-up after childhood cancer: evaluation of a three-level model.

INTRODUCTION: Follow-up for cancer survivors is recommended to detect recurrence; monitor late-effects; record toxicity and provide care and education. We describe our experience with a three-level model developed to guide decisions about intensity and frequency of follow-up [Wallace WHB, Blacklay A, Eiser C, et al. Developing strategies for the long term follow-up of survivors of childhood cancer. BMJ 2001;323:271-274]. PROCEDURE: One hundred and ninety eight survivors (52% male) recruited over 12-months: (mean age=23.8 years, range=16-39 years; mean time since diagnosis=16.2 years, range 2.4-32.7 years) reported their number of symptoms and late-effects. Information was taken from the medical records to assign each survivor to the appropriate levels by six clinic staff independently. RESULTS: The survivors were assigned to level 1 (n=8), level 2 (n=97) and level 3 (n=93). There were seven cases of disagreement. Level 3 survivors self-reported more symptoms and late-effects than level 2 survivors. CONCLUSIONS: Coding was relatively simple for experienced clinic staff, although there were some disagreements for the survivors of ALL. The relationship between assigned level and self-reported symptoms and late-effects provides some evidence for validity of the model. We conclude that it is important to maintain flexibility to allow movement between levels for individual patients and that the default should always be to the higher level.