Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified in consultations

Long, T; Estlin, E; Nenadic, G; Keane, J; Gattamaneni, R; McCabe, M; Kamaly-Asl, I; Deghan, A

Abstract

When the study was planned, the Young Oncology Unit at The Christie housed both the adult and paediatric follow-up clinics for patients who have been diagnosed with a tumour of the central nervous system (CNS) in childhood and adolescence or young adult life. Over the past 10 years, the paediatric clinic had developed a true multi-disciplinary team function with input from paediatric oncology, clinical oncology, teenage and young adult oncology, neurosurgery, social work, physiotherapy and clinical psychology. In contrast, the adult clinic (for follow-up of patients diagnosed in childhood and also in late teenage or early adult life) had solely medical input. The clinic for the follow-up of adult survivors of childhood CNS tumours at The Christie had significantly less multidisciplinary team involvement than its paediatric counterpart, and it was postulated that adult patients’ needs might not be addressed as fully by the current provision.

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 context of the adult and paediatric clinics. Ultimately, this information was expected to inform planning for improvements in survivorship support in both clinics.

Citation

Long, T., Estlin, E., Nenadic, G., Keane, J., Gattamaneni, R., McCabe, M., …Deghan, A. (2015). Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified in consultations

• Report Type: Project Report
• Publication Date: Jan 1, 2015
• Deposit Date: Feb 22, 2021
• Publicly Available Date: Feb 22, 2021
• ISBN: 9781907842740
• Additional Information: Funders : Christie Hospital Paediatric Oncology Charitable Fund; Projects : Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified in consultations