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Patient and parent perspectives on paediatric cancer multidisciplinary team working and national advisory panels in the UK: a qualitative research study
  1. Sarah Brown1,2,
  2. Katie Johnson1,
  3. Juliet Gray1,2,
  4. Jessica Bate3
  1. 1 Department of Paediatric Oncology, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  2. 2 Department of Cancer Sciences, University of Southampton, Southampton, UK
  3. 3 Department of Paediatric Oncology, Southampton Children's Hospital, Southampton, UK
  1. Correspondence to Dr Sarah Brown, Paediatric Oncology, University Hospital Southampton NHS Foundation Trust, Southampton, UK; sarah.brown2{at}uhs.nhs.uk

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.

  • paediatrics
  • child health services

Data availability statement

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

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Data availability statement

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

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Footnotes

  • Contributors SB and JB designed this work; SB planned the focus groups with substantial contributions from JG and JB. SB, KJ and JB conducted the focus groups. SB analysed and interpreted the data. SB drafted the manuscript, which was revised critically by KJ, and JG and JB, as the two joint senior authors. All authors approved the final version. SB acted as the guarantor.

  • Funding This work was supported by the Children’s Cancer and Leukaemia Group (CCLG), Grant/Award Number: CCLGA 2017 24, as part of a larger project evaluating UK National Advisory Panels for childhood cancer.

  • Competing interests None declared.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.