Title: A feasibility study of enhanced occupational therapy interventions for children and adolescents with central nervous system tumours in the first two years from diagnosis
Funder: Department of Health (England)

Abstract: Approximately 350 children and adolescents are diagnosed with a tumour of the central nervous system (CNS) each year in the UK. Many patients experience a reduction in their normal participation in day-to-day school and social activities. This may be reflected in significant reduction in health-related quality of life (HRQL) that is recognised for these patients from the point of diagnosis onwards. Occupational therapy (OT) is a skilled, research-based rehabilitation profession that uses treatment strategies to ensure that young persons experiencing health problems have the ability to engage in everyday activities such as self-care, leisure, learning and work. However, there are no harmonised and standardised practices in relation to OT assessments and interventions in the UK. The aim is to pilot a protocol for OT assessment intervention and outcome measures that include HRQL, health status, fatigue, psychological functioning and family impact in the multicentre setting for children with CNS tumours in the first 2 years following diagnosis. This study is intended as the first step in the development and evaluation of a complex intervention according to current MRC guidelines. The project will evaluate the feasibility of a comprehensive method for OT assessment and intervention in two UK principal treatment centres for children with CNS tumours. Steering group meetings at 0. 4, 8, 12, 16, 22 and 24 months will address emerging findings in order to define and reinforce best practice informed by emerging outcome data. At these meetings the findings of the narrative experiences of study particpants and the formal process analysis that has been informed by systematic analysis of health records will help to discuss and define how decisions are being made contextually in different clinical scenarios. Children and young people of 2-16 years of age with a diagnosis of a CNS tumour will be eligible according to two criteria: Group A (50 patients) patients will be newly diagnosed so that this cohort will comprise patients with surgery alone, patients with radiological diagnosis without need for biopsy, patients who undergo radiotherapy or chemotherapy after surgery and patients who undergo all three treatment modalities of surgery, radiotherapy and chemotherapy after diagnosis. Group B (10 patients) will be eligible on the basis that they are within 3 months of the end of their time of chemotherapy so that the nature and effect of OT interventions during the transition from chemotherapy to follow-up can be investigated. The number of patients that are required from those eligible for each subgroup will be tumour type, socioeconomic background and baseline neurological functioning after surgery (evidence of posterior fossa syndrome). To demonstrate that a method for OT-based assessment, intervention and outcome measures can be applied to this patient population with fidelity for use between treatment centres would be an important first step in generating an evidence base for this complex intervention. We will have described in detail and by formal process-mapping how actual OT-based rehabilitation relates to hospital and community for the first time in the world literature and ensured that this method has applicability to this patient population in practice. We will also have established the foundations from which we could take the final template forward towards randomised clinical trials or another more observational design to assess the efficacy of OT interventions, with health economic input, in this setting.


Research activity codes: 6.7 PHYSICAL
Health categories: CANCER AND NEOPLASMS