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Codesign of Lynch ChoicesTM : Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways.
Kohut, Kelly; Morton, Kate; Turner, Lesley; Foster, Rebecca; Eccles, Diana; Foster, Claire.
Afiliação
  • Kohut K; Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK.
  • Morton K; St George's University Hospitals NHS Foundation Trust, London, UK.
  • Turner L; Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK.
  • Foster R; Patient and Public Contributor, University of Southampton, Southampton, UK.
  • Foster C; Faculty of Medicine, University of Southampton, Southampton, UK.
Psychooncology ; 33(3): e6330, 2024 Mar.
Article em En | MEDLINE | ID: mdl-38502032
ABSTRACT

BACKGROUND:

Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM , a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care.

METHODS:

Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM . An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA.

RESULTS:

Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map.

CONCLUSIONS:

Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset to translate research findings into clinical practice.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Procedimentos Clínicos / Neoplasias Limite: Humans Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Procedimentos Clínicos / Neoplasias Limite: Humans Idioma: En Ano de publicação: 2024 Tipo de documento: Article