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  • Improving the patient-centred care of children with life-altering skin conditions using feedback from electronic patient-reported outcome measures: protocol for a hybrid effectiveness-implementation study (PEDS-ePROM)

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Paediatrics
Protocol
Improving the patient-centred care of children with life-altering skin conditions using feedback from electronic patient-reported outcome measures: protocol for a hybrid effectiveness-implementation study (PEDS-ePROM)
  1. Zephanie Tyack1,2,3,
  2. Megan Simons1,4,
  3. Steven M McPhail3,5,
  4. Gillian Harvey6,
  5. Tania Zappala7,
  6. Robert S Ware8,
  7. Roy M Kimble1,2
  1. 1Centre for Children’s Burns and Trauma Research, Child Health Research Centre, The University of Queensland, Saint Lucia, Queensland, Australia
  2. 2Pegg Leditschke Children’s Burns Centre, Children’s Health Queensland, South Brisbane, Queensland, Australia
  3. 3Australian Centre for Health Services Innovation, Centre for Healthcare Transformation, School of Public Health and Social Work, Queensland University of Technology, Brisbane, Queensland, Australia
  4. 4Department of Occupational Therapy, Queensland Children’s Hospital, South Brisbane, Queensland, Australia
  5. 5Clinical Informatics Directorate, Metro South Health, Brisbane, Queensland, Australia
  6. 6Adelaide Nursing School, The University of Adelaide, Adelaide, South Australia, Australia
  7. 7General Paediatrics and Dermatology Department, Queensland Children’s Hospital, South Brisbane, Queensland, Australia
  8. 8Menzies Health Institute Queensland, Griffith University - GC Campus, Southport, Queensland, Australia
  1. Correspondence to Dr Zephanie Tyack; z.tyack{at}qut.edu.au

Abstract

Introduction Using patient-reported outcome measures (PROMs) with children have been described as ‘giving a voice to the child’. Few studies have examined the routine use of these measures as potentially therapeutic interventions. This study aims to investigate: (1) the effectiveness of feedback using graphical displays of information from electronic PROMs (ePROMs) that target health-related quality of life, to improve health outcomes, referrals and treatment satisfaction and (2) the implementation of ePROMs and graphical displays by assessing acceptability, sustainability, cost, fidelity and context of the intervention and study processes.

Methods and analysis A hybrid II effectiveness-implementation study will be conducted from February 2020 with children with life-altering skin conditions attending two outpatient clinics at a specialist paediatric children’s hospital. A pragmatic randomised controlled trial and mixed methods process evaluation will be completed. Randomisation will occur at the child participant level. Children or parent proxies completing baseline ePROMs will be randomised to: (1) completion of ePROMs plus graphical displays of ePROM results to treating clinicians in consultations, versus (2) completion of ePROMs without graphical display of ePROM results. The primary outcome of the effectiveness trial will be overall health-related quality of life of children. Secondary outcomes will include other health-related quality of life outcomes (eg, child psychosocial and physical health, parent psychosocial health), referrals and treatment satisfaction. Trial data will be primarily analysed using linear mixed-effects models; and implementation data using inductive thematic analysis of interviews, meeting minutes, observational field notes and study communication mapped to the Consolidated Framework for Implementation Research.

Ethics and dissemination Ethical approval was obtained from Children’s Health Queensland Human Research Ethics Committee (HREC/2019/QCHQ/56290), The University of Queensland (2019002233) and Queensland University of Technology (1900000847). Dissemination will occur through stakeholder groups, scientific meetings and peer-reviewed publications.

Trial registration number Australian New Zealand Clinical Trials Registry (ACTRN12620000174987).

  • paediatrics
  • change management
  • paediatric dermatology
  • telemedicine
  • organisation of health services
http://creativecommons.org/licenses/by-nc/4.0/

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/bmjopen-2020-041861

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    Footnotes

    • Twitter @tyack_z, @GillHar26

    • Contributors ZT designed the study with input from SMM and RSW for the effectiveness evaluation, GH for the implementation evaluation and RMK and MS for integrating with existing clinical processes. ZT drafted the protocol and SMM, MS, TZ, RSW and RMK critically revised the manuscript.

    • Funding This work was supported by a Health Services Research grant from the Children’s Hospital Foundation, Brisbane, grant number 50297. The funder had no input into the design or conduct of the study.

    • Competing interests ZT, MS and RMK developed the Brisbane Burn Scar Impact Profile which was included as a scar-specific measure in this study. MS and RMK were clinical staff members of the health service where the study will be conducted at the time of submission.

    • 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.