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.
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.
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.
Most service users would benefit from treatment summaries, although notably not all. The format and timing of the provision need to be carefully considered.
*School of Medicine, Sheffield University
†Department of Paediatric and Adolescent Haematology and Oncology, Great North Children’s Hospital, Royal Victoria Infirmary, Newcastle-upon-Tyne, UK
The authors declare no conflict of interest.
Reprints: Roderick Skinner, MBChB, FRCPCH, PhD, Department of Paediatric and Adolescent Haematology and Oncology, Great North Children’s Hospital, Royal Victoria Infirmary, Newcastle-upon-Tyne, NE1 4LP, UK (e-mail: firstname.lastname@example.org).
Received January 28, 2012
Accepted June 30, 2012