Views of childhood cancer survivors and their families on the provision and format of a treatment summary.

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.