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Oncology
Original research
Paediatric neuro-oncology rehabilitation in the UK: carer and provider perspectives
  1. Bethan Treadgold1,
  2. Colin Kennedy2,
  3. Helen Spoudeas3,
  4. Elaine Sugden4,
  5. David Walker5,
  6. Kim Bull2
  1. 1 Department of Primary Care and Population Sciences, University of Southampton, Southampton, UK
  2. 2 Clinical and Experimental Sciences, University of Southampton, Southampton, Hampshire, UK
  3. 3 Centre for Paediatric Endocrinology, University College London, London, London, UK
  4. 4 Oxford, UK
  5. 5 Children’s Brain Tumour Research Centre, University of Nottingham, Nottingham, Nottinghamshire, UK
  1. Correspondence to Dr Colin Kennedy; crk1{at}southampton.ac.uk

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 two 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 central nervous system (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.

Conclusion 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.

  • children
  • young people
  • young adults
  • CNS tumours
  • rehabilitation services

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjpo-2019-000567

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    Footnotes

    • Contributors BT contributed to the study design, literature search, data collection, data analysis, data interpretation and writing the manuscript. CK contributed to the original concept of the study, the study design, literature search, data interpretation and writing the manuscript. HS, ES and DW contributed to the original concept of the study, study design, data interpretation and writing the manuscript. KB contributed to the original concept of the study, the study design, literature search, data collection, data analysis, data interpretation and writing the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None.

    • Patient consent for publication Not required.

    • Ethics approval Survey 1 was approved by the University of Southampton’s Faculty of Medicine Ethics Committee (ref: 25374). Ethics approval was not required for patient and public involvement in Survey 2.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.