Patient and parent perspectives on paediatric cancer multidisciplinary team working and national advisory panels in the UK: a qualitative research study
Patient and parent perspectives on paediatric cancer multidisciplinary team working and national advisory panels in the UK: a qualitative research study
Objective: the concept of patient-centred care is central to the role of cancer multidisciplinary teams (MDTs) and particularly pertinent with the recent rise in number of virtual national advisory panels (NAPs) for childhood cancer in the UK. We sought to explore patient and caregiver views regarding MDT working and NAPs.
Methods: three focus groups were undertaken between March 2019 and January 2020.
Results: sixteen participants attended. All regarded MDTs and NAPs highly, while highlighting patient involvement in decision-making should not be diluted by this process. The importance of personalised consultations was stressed, acknowledging that information-sharing preferences may change with circumstance and time. Most participants felt they had not been actively involved in decisions, including those made following MDT or NAP discussions. Group suggestions to improve patient-centred care included a clinician knowing them presenting their case, referral proformas to include family-related factors and an advocate attending meetings to represent the patient/family view.
Conclusion: several changes have been driven forward by this work, including the modification of NAP referral proformas to include additional information. Patient and parent perspectives are now embedded into a best practice model for the NAPs to promote personalised recommendations at national level.
child health services, paediatrics
321-325
Brown, Sarah
9ca200b1-bc3e-4a85-b8f8-d171c12b965a
Johnson, Katie
3bf82071-41f1-4142-b71d-e22efdecd6bb
Gray, Juliet
12d5e17c-97bb-4d6d-8fc4-3914b730ed42
Bate, Jessica
53430c5a-bde3-4c13-826d-a1c3ae0ecaf9
30 January 2024
Brown, Sarah
9ca200b1-bc3e-4a85-b8f8-d171c12b965a
Johnson, Katie
3bf82071-41f1-4142-b71d-e22efdecd6bb
Gray, Juliet
12d5e17c-97bb-4d6d-8fc4-3914b730ed42
Bate, Jessica
53430c5a-bde3-4c13-826d-a1c3ae0ecaf9
Brown, Sarah, Johnson, Katie, Gray, Juliet and Bate, Jessica
(2024)
Patient and parent perspectives on paediatric cancer multidisciplinary team working and national advisory panels in the UK: a qualitative research study.
Archives of Disease in Childhood, 109 (4), , [326604].
(doi:10.1136/archdischild-2023-326604).
Abstract
Objective: the concept of patient-centred care is central to the role of cancer multidisciplinary teams (MDTs) and particularly pertinent with the recent rise in number of virtual national advisory panels (NAPs) for childhood cancer in the UK. We sought to explore patient and caregiver views regarding MDT working and NAPs.
Methods: three focus groups were undertaken between March 2019 and January 2020.
Results: sixteen participants attended. All regarded MDTs and NAPs highly, while highlighting patient involvement in decision-making should not be diluted by this process. The importance of personalised consultations was stressed, acknowledging that information-sharing preferences may change with circumstance and time. Most participants felt they had not been actively involved in decisions, including those made following MDT or NAP discussions. Group suggestions to improve patient-centred care included a clinician knowing them presenting their case, referral proformas to include family-related factors and an advocate attending meetings to represent the patient/family view.
Conclusion: several changes have been driven forward by this work, including the modification of NAP referral proformas to include additional information. Patient and parent perspectives are now embedded into a best practice model for the NAPs to promote personalised recommendations at national level.
Text
Patient and Parent Perspectives on Paediatric Cancer MDT - tracked changes document
- Accepted Manuscript
More information
Accepted/In Press date: 8 January 2024
e-pub ahead of print date: 30 January 2024
Published date: 30 January 2024
Additional Information:
Publisher Copyright:
© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.
Keywords:
child health services, paediatrics
Identifiers
Local EPrints ID: 488290
URI: http://eprints.soton.ac.uk/id/eprint/488290
ISSN: 0003-9888
PURE UUID: 2032e8e9-c345-47f2-9a2f-001f3959e32c
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Date deposited: 19 Mar 2024 18:04
Last modified: 02 May 2024 01:37
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Contributors
Author:
Sarah Brown
Author:
Katie Johnson
Author:
Jessica Bate
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