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

Paediatric neuro-oncology rehabilitation in the UK: care provider and service user perspectives
Paediatric neuro-oncology rehabilitation in the UK: care provider and service user perspectives
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.
1-21
Treadgold, B.M.
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Kennedy, C.
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Spoudeas, H.A.
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Sugden, E.
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Walker, D.W.
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Bull, K.
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Treadgold, B.M.
2a3db993-882b-4fc3-9919-8966edf08aa1
Kennedy, C.
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Spoudeas, H.A.
e9c1078c-3d73-4663-bbac-b62e80eba0db
Sugden, E.
093929b7-4bd8-47aa-8ade-d3563ea018dd
Walker, D.W.
16e42c37-8f24-498b-947d-5151a2f83b37
Bull, K.
751f8b25-29ba-4d4f-96e2-6c339a83a47f

Treadgold, B.M., Kennedy, C., Spoudeas, H.A., Sugden, E., Walker, D.W. and Bull, K. (2019) Paediatric neuro-oncology rehabilitation in the UK: care provider and service user perspectives. BMJ Paediatrics Open, 3, 1-21, [e000567]. (doi:10.1136/bmjpo-2019-000567).

Record type: Article

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.

Text
Bethan Treadgold Paediatric Neuro-Oncology in the UK _BMJ Paediatrics Open revised manuscript-2 - Accepted Manuscript
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More information

Submitted date: 2019
Accepted/In Press date: 23 October 2019
e-pub ahead of print date: 15 December 2019

Identifiers

Local EPrints ID: 429333
URI: http://eprints.soton.ac.uk/id/eprint/429333
PURE UUID: 8ed2cac0-9118-4148-81d7-f19ea1358fb3
ORCID for B.M. Treadgold: ORCID iD orcid.org/0000-0002-0255-7422
ORCID for K. Bull: ORCID iD orcid.org/0000-0002-5541-4556

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Date deposited: 26 Mar 2019 17:30
Last modified: 29 Oct 2023 02:41

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Contributors

Author: B.M. Treadgold ORCID iD
Author: C. Kennedy
Author: H.A. Spoudeas
Author: E. Sugden
Author: D.W. Walker
Author: K. Bull ORCID iD

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