Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified during consultations
This study was designed to develop a process to capture information systematically about patients’ problems in the domains of medical, physical, psychological and social wellbeing in order to compare the extent to which these were recognised and supported in the adult and paediatric follow-up clinics. Ultimately, this information was expected to inform planning for improvements in survivorship support in both clinics. Children who are diagnosed with a CNS tumour have long been known to face many survivorship challenges that include problems relating to neurological functioning, epilepsy, vision, hearing, short stature, endocrinopathy and psychosocial functioning
From a sample of 21 patients 11-39 years (6 months to 12 years at diagnosis), measures were taken of health status (HUI); quality of life (PedsQL / EORTC QLQ-C30); and psychological wellbeing (HADS/PI-ED). Patients & carers were interviewed to elicit the problems experienced since diagnosis. Scanned medical records (discharge summaries, psychology reports, etc) were then subjected to clinical text mining. Comparison was made between the problems experienced by patients and the concerns pursued by professionals.
Huge differences were found between patients’ and professionals’ reports of problems and quality of life. Earlier patients’ packages might never catch up with current service standards. Parents did not ask about, and sometimes were unaware of possible services. Significant disabilities were accepted and considered routine by both families and professionals. Overt disabilities were addressed, but less obvious ones were under-estimated, unreported & unresolved. The study enabled health professionals to focus more closely on issues that were problematic for families rather than solely on medically-related factors.
Funder: Christie Hospital Fund
Team: Professor Tony Long, with colleagues from University of Manchester, The Christie Hospital and Royal Manchester Children’s Hospital.