Paediatric neuro-oncology rehabilitation in the UK: care provider and service user perspectives

Abstract

Objective: The provision of rehabilitation services after childhood brain tumour has not been established, despite a recent parliamentary call for urgent action. This service evaluation aimed to determine what specialist paediatric neuro-oncology rehabilitation services were available across the UK at the time of the surveys, and whether the needs of patients and their families were being met.

Design: Cross-sectional on-line surveys.

Participants: Survey 1: Neuro-oncologist and nurse specialist members of the Children’s Cancer and Leukaemia Group (CCLG) at Children’s Principle Treatment Centres (PTCs) in the UK; Survey 2: Parents of paediatric neuro-oncology patients belonging to The Brain Tumour Charity (TBTC) Research Involvement Network (RIN).

Results: 17 of the 20 (85%) PTCs in the UK and 2 teenagers and young adult cancer units responded to Survey 1, and 17 members of TBTC’s RIN responded to Survey 2. Access to inpatient and outpatient neuro-oncology rehabilitation services after treatment for a CNS tumour varied across regions in the UK. Service users in the RIN identified a need for an established neuro-oncology rehabilitation service for young people, a need for better communication across services and with families, and a need to fill gaps in multidisciplinary teams.

Conclusions: The urgent need for specialist paediatric, teenage, and young adult neuro-oncology rehabilitation services in the UK is often unmet, particularly for outpatients. Where services are not provided for those children and young people disadvantaged by the diagnosis of a CNS tumour, in clear breach of current guidelines, remedial action needs to be taken to ensure appropriate and equal access.

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Identifiers

ORCID for B.M. Treadgold: orcid.org/0000-0002-0255-7422

ORCID for K. Bull: orcid.org/0000-0002-5541-4556

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