Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified during consultations. With a 21 patients 11-39 years (6 months to 12yrs at diagnosis.
Data Collection: Measures 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) subjected to clinical text mining
Outcomes: 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.
Funder: The Christie Hospital Fund. REC no. 11/NW/0662
Team: Professor Tony Long (University of Salford) with Dr Eddy Estlin, Dr Rao Gattamaneni,* Dr Martin McCabe,* Mr Ian Kamaly,+ Dr Goran Nenadic,^ Professor John Keane,^ Azad Dehghan, The Christie Hospital +Royal Manchester Children’s Hospital ^University of Manchester