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

Taylor, Naomi; Absolom, Kate; Michel, Gisela; Urquhart, Tanya; Gerrard, Mary; Jenkins, Anna; Lee, Vicki; Vora, Ajay; Eiser, Christine

doi:10.1016/j.ejca.2010.01.022

« Previous Next »European Journal of Cancer
Volume 46, Issue 6 , Pages 1069-1078, April 2010

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

Naomi Taylor
- University of Sheffield Medical School, Beech Hill Road, Sheffield, UK
Kate Absolom
- Psychosocial Oncology and Clinical Practice Research Group, Bexley Wing, St. James’s Institute of Oncology, Beckett Street, Leeds, UK
Gisela Michel
- Department of Psychology, University of Sheffield, Western Bank, Sheffield, UK
Tanya Urquhart
- Sheffield Children’s Hospital, Department of Haematology/Oncology, Western Bank, Sheffield, UK
Mary Gerrard
- Sheffield Children’s Hospital, Department of Haematology/Oncology, Western Bank, Sheffield, UK
Anna Jenkins
- Sheffield Children’s Hospital, Department of Haematology/Oncology, Western Bank, Sheffield, UK
Vicki Lee
- Sheffield Children’s Hospital, Department of Haematology/Oncology, Western Bank, Sheffield, UK
Ajay Vora
- Sheffield Children’s Hospital, Department of Haematology/Oncology, Western Bank, Sheffield, UK
Christine Eiser
- Department of Psychology, University of Sheffield, Western Bank, Sheffield, UK
- Corresponding author: Tel.: +44 114 222 6621; fax: +44 0114 276 6515.

Received 22 July 2009; received in revised form 10 December 2009; accepted 15 January 2010. published online 19 February 2010.

Abstract

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.

Keywords: Childhood cancer, Survivors, Follow-up care, Late effects