National advisory panels for childhood cancer in the United Kingdom: an evaluation of current practice and a best practice statement for the future
National advisory panels for childhood cancer in the United Kingdom: an evaluation of current practice and a best practice statement for the future
Background: National advisory panels (NAPs) have been established for the care of children and young people (CYP) with cancer in the United Kingdom since 2011, with an increase in panel number in recent years. Their practice has not previously been reviewed; therefore, we sought to evaluate the role, practice and impact of six selected NAPs offering expertise in ependymoma, histiocytosis, leukaemia, neuroblastoma, renal tumours and sarcoma. Procedure: This service evaluation used mixed methodology, including review of NAP documentation, semi-structured interviews with the NAP chairs and an analysis of the cases referred for discussion. Results: Total 1110 referrals were analysed. Results demonstrated the significant scope and amount of work undertaken by the NAPs, largely testament to the commitment of the panel members. Specific roles fulfilled have been highlighted, and NAP recommendations have been shown to influence clinical decision-making and be implemented in the majority of cases. Despite widespread good practice, areas to address have been identified; these include clarity regarding NAP membership, consistency in recommendations, the consideration of holistic information to promote personalised management and the exploration of wider multidisciplinary team roles. Conclusions: In the context of increasing demand and the escalating number of NAPs, it is timely to consider how service improvement can be facilitated. Best practice guidelines have been formulated as a product of this study, to promote a sustainable and effective model for NAPs. Review and benchmarking national panel performance against these guidelines will drive high standards of care going forward and they should be embedded as standard practice.
multidisciplinary team, national advisory panel, Sarcoma, Humans, Leukemia, Adolescent, United Kingdom, Neuroblastoma, Child
e30159
Brown, Sarah
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Chowdhury, Tanzina
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Collin, Matthew
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Grundy, Richard G.
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Howell, Lisa
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Ramanujachar, Ramya
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Rees, Helen
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Vora, Ajay
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Gray, Juliet C.
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Bate, Jessica
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1 March 2023
Brown, Sarah
9ca200b1-bc3e-4a85-b8f8-d171c12b965a
Chowdhury, Tanzina
1ae221ff-fc65-4c1f-ab77-6e60e4f1b991
Collin, Matthew
1007a158-59e1-4575-8ec6-85e686d0bcc9
Grundy, Richard G.
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Howell, Lisa
07190f41-5a65-474e-b8ec-fa6cc1ef572c
Ramanujachar, Ramya
9a27f52b-157d-4349-b255-a2990da1e986
Rees, Helen
90e5d60b-c89c-4560-a3e2-75151a44c4f0
Vora, Ajay
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Gray, Juliet C.
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Bate, Jessica
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Brown, Sarah, Chowdhury, Tanzina, Collin, Matthew, Grundy, Richard G., Howell, Lisa, Ramanujachar, Ramya, Rees, Helen, Vora, Ajay, Gray, Juliet C. and Bate, Jessica
(2023)
National advisory panels for childhood cancer in the United Kingdom: an evaluation of current practice and a best practice statement for the future.
Pediatric Blood and Cancer, 70 (3), , [e30159].
(doi:10.1002/pbc.30159).
Abstract
Background: National advisory panels (NAPs) have been established for the care of children and young people (CYP) with cancer in the United Kingdom since 2011, with an increase in panel number in recent years. Their practice has not previously been reviewed; therefore, we sought to evaluate the role, practice and impact of six selected NAPs offering expertise in ependymoma, histiocytosis, leukaemia, neuroblastoma, renal tumours and sarcoma. Procedure: This service evaluation used mixed methodology, including review of NAP documentation, semi-structured interviews with the NAP chairs and an analysis of the cases referred for discussion. Results: Total 1110 referrals were analysed. Results demonstrated the significant scope and amount of work undertaken by the NAPs, largely testament to the commitment of the panel members. Specific roles fulfilled have been highlighted, and NAP recommendations have been shown to influence clinical decision-making and be implemented in the majority of cases. Despite widespread good practice, areas to address have been identified; these include clarity regarding NAP membership, consistency in recommendations, the consideration of holistic information to promote personalised management and the exploration of wider multidisciplinary team roles. Conclusions: In the context of increasing demand and the escalating number of NAPs, it is timely to consider how service improvement can be facilitated. Best practice guidelines have been formulated as a product of this study, to promote a sustainable and effective model for NAPs. Review and benchmarking national panel performance against these guidelines will drive high standards of care going forward and they should be embedded as standard practice.
Text
Pediatric Blood Cancer-2022 - Brown
- Version of Record
More information
Accepted/In Press date: 4 November 2022
e-pub ahead of print date: 24 December 2022
Published date: 1 March 2023
Additional Information:
Funding Information:
Dr Johannes Visser, Department of Paediatric Oncology, Addenbrookes Hospital, Cambridge, UK The National Advisory Panel members for ependymoma, histiocytosis, leukaemia, neuroblastoma, renal tumours and sarcoma.
Publisher Copyright:
© 2022 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.
Keywords:
multidisciplinary team, national advisory panel, Sarcoma, Humans, Leukemia, Adolescent, United Kingdom, Neuroblastoma, Child
Identifiers
Local EPrints ID: 475410
URI: http://eprints.soton.ac.uk/id/eprint/475410
ISSN: 1545-5009
PURE UUID: 090a9787-1736-41d0-b177-35314dea7714
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Date deposited: 17 Mar 2023 17:34
Last modified: 17 Mar 2024 13:17
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Contributors
Author:
Sarah Brown
Author:
Tanzina Chowdhury
Author:
Matthew Collin
Author:
Richard G. Grundy
Author:
Lisa Howell
Author:
Ramya Ramanujachar
Author:
Helen Rees
Author:
Ajay Vora
Author:
Juliet C. Gray
Author:
Jessica Bate
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