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Views of Childhood Cancer Survivors and Their Families on the Provision and Format of a Treatment Summary

Lookup NU author(s): Professor Roderick Skinner


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Introduction: Summaries of diagnosis, treatments, and their potential late adverse health effects (treatment summaries) are increasingly being provided routinely to survivors of childhood cancer. There is relatively little research into opinions of service users on the provision and format of treatment summaries.Methods: Semistructured interviews were conducted with 24 survivors of childhood cancer, and 25 parents of 20 of these survivors (n=49) were asked to explore these issues. Survivors were aged 4 to 22 years, with a range of previous oncological diagnoses. The mean (range) interval since treatment completion was 4.5 (0.5 to 13) years.Results: Twelve survivors (50%) and 16 parents (64%) fully supported the use of treatment summaries as: a memory aid, a reference tool for planned and emergency medical situations, life and financial planning, and to promote ownership of health. Four survivors felt they did not want, or did not need, a reminder of their medical past. Most participants (63% of survivors) desired a verbal explanation plus a written A4 paper treatment summary. However, other formats (wallet sized, audio guides) were suggested to address practical and individual needs raised by participants.Conclusions: Most service users would benefit from treatment summaries, although notably not all. The format and timing of the provision need to be carefully considered.

Publication metadata

Author(s): Firth ER, Davies N, Skinner R

Publication type: Article

Publication status: Published

Journal: Journal of Pediatric Hematology/Oncology

Year: 2013

Volume: 35

Issue: 3

Pages: 193-196

Print publication date: 01/04/2013

ISSN (print): 1077-4114

Publisher: Lippincott Williams & Wilkins


DOI: 10.1097/MPH.0b013e3182678aee


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