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

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• 作者：Naomi Taylor ; Kate Absolom ; Gisela Michel ; Tanya Urquhart ; Mary Gerrard ; Anna Jenkins ; Vicki Lee ; Ajay Vora ; Christine Eiser
• 关键词：Childhood cancer ; Survivors ; Follow-up care ; Late effects
• 刊名：European Journal of Cancer
• 出版年：2010
• 出版时间：April 2010
• 年：2010
• 卷：46
• 期：6
• 页码：1069-1078
• 全文大小：318 K

文摘

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.