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Patient-centred medicine
Research
Collaborative design of a decision aid for stroke survivors with multimorbidity: a qualitative study in the UK engaging key stakeholders
  1. Talya Porat1,
  2. Iain J Marshall2,
  3. Euan Sadler3,
  4. Miguel A Vadillo4,
  5. Christopher McKevitt2,
  6. Charles D A Wolfe2,
  7. Vasa Curcin2
  1. 1 Dyson School of Design Engineering, Imperial College London, London, UK
  2. 2 School of Population Health and Environmental Sciences, King’s College London, London, UK
  3. 3 School of Health Sciences, University of Southampton, UK
  4. 4 Departamento de Psicología Básica, Universidad Autónoma de Madrid, Madrid, Spain
  1. Correspondence to Dr Talya Porat; t.porat{at}imperial.ac.uk

Abstract

Objectives Effective secondary stroke prevention strategies are suboptimally used. Novel development of interventions to enable healthcare professionals and stroke survivors to manage risk factors for stroke recurrence are required. We sought to engage key stakeholders in the design and evaluation of an intervention informed by a learning health system approach, to improve risk factor management and secondary prevention for stroke survivors with multimorbidity.

Design Qualitative, including focus groups, semistructured interviews and usability evaluations. Data was audio recorded, transcribed and coded thematically.

Participants Stroke survivors, carers, health and social care professionals, commissioners, policymakers and researchers.

Setting Stroke survivors were recruited from the South London Stroke Register; health and social care professionals through South London general practices and King’s College London (KCL) networks; carers, commissioners, policymakers and researchers through KCL networks.

Results 53 stakeholders in total participated in focus groups, interviews and usability evaluations. Thirty-seven participated in focus groups and interviews, including stroke survivors and carers (n=11), health and social care professionals (n=16), commissioners and policymakers (n=6) and researchers (n=4). Sixteen participated in usability evaluations, including stroke survivors (n=8) and general practitioners (GPs; n=8). Eight themes informed the collaborative design of DOTT (Deciding On Treatments Together), a decision aid integrated with the electronic health record system, to be used in primary care during clinical consultations between the healthcare professional and stroke survivor. DOTT aims to facilitate shared decision-making on personalised treatments leading to improved treatment adherence and risk control. DOTT was found acceptable and usable among stroke survivors and GPs during a series of evaluations.

Conclusions Adopting a user-centred data-driven design approach informed an intervention that is acceptable to users and has the potential to improve patient outcomes. A future feasibility study and subsequent clinical trial will provide evidence of the effectiveness of DOTT in reducing risk of stroke recurrence.

  • Stroke Medicine
  • Primary Care
  • Learning Health System
  • Shared Decision Making
  • Decision Support System
  • Stakeholder Engagment

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/bmjopen-2019-030385

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    Footnotes

    • Contributors Conception and design of study: TP, IJM, ES, MAV, CK, CDAW and VC. Data collection: TP, IJM and ES. Thematic analysis and interpretation of data: TP, IJM, ES, MAV and VC. Initial draft of manuscript: TP. Revising the paper critically for important intellectual content: TP, IJM, ES, MAV, CM, CDAW and VC. Sign-off final version of manuscript: TP, IJM, ES, MAV, CM, CDAW and VC.

    • Funding This work was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London at King’s College Hospital NHS Foundation Trust, and the NIHR Biomedical Research Centre, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London, UK (award number NIHR CLAHRC-2013-10022). Porat and Curcin were also supported by the EPSRC CONSULT grant (EP/P010105/1).

    • Competing interests None declared.

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

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

    • Author note Checklist for reporting guidelines: the authors used SRQR guidelines for reporting qualitative research.

    • Patient consent for publication Not required.