Occupational therapy interventions for children with central nervous system tumours in the first two years from diagnosis: a pilot study to demonstrate feasibility for multicentre application
Approximately 350 children and adolescents each year in the UK are diagnosed with a brain tumour. Many of these face challenges at all stages of their journey post-diagnosis with detriments to physical, hormonal, cognitive and emotional functioning impacting on their successful return to school, friendships, gaining educational qualifications and prospects for future employment. These factors contribute to low scores for health-related quality of life, health status and psychological functioning. The National Cancer Survivor Initiative calls for new approaches to survivorship care for children with brain tumours. Occupational Therapy (OT) is a rehabilitation profession that uses treatment strategies to help children and young people with health problems to engage in everyday activities such as self-care, self-esteem, life skills, play, leisure and education. However, there are no standardised ways to achieve these outcomes and there is marked variability in OT resource in both hospital and community settings for children and young people with brain tumours.
This project applied the skills of two OTs to help children with brain tumours in the first two years following diagnosis, during which time treatments with surgery, radiotherapy and chemotherapy are completed and long-term follow up begins. By providing OT in hospital, home and school in a way that was acceptable to patients a much-enhanced level of intervention was achieved. Health professionals, patients and their families were consulted alongside scientists who work with information from medical records and consultations using a technique called process-mapping, in order to bring a uniform approach to OT decision-making. This study provided the first step towards the design of a uniform approach to OT intervention across several treatment centres. This was essential preparation for a study of treatment effectiveness in this clinical setting.
The project established the feasibility of performing OT-based assessments and interventions, and evaluating a variety of qualitative and objective outcomes in this patient population. Standardising this approach between two treatment centres meant that it could be copied in more centres. Despite particularly poor scores for health and quality of life, some improvement was made in most factors that were measured. Patients and parents found it helpful to receive the new service and felt able to continue with the interventions after the study had ended.
Funder: NIHR RfPB £202,000
Research Team: Tony Long (CI), Ruth Morgan, John Keane, Ian Kamaly-Asl, Barry Pizer, Goran Nenadic, Caroline Fillery, Paula Galloway, Deborah Davys, Kate Owens, Azad Dehghan, Eddy Estlin