Codesign of Lynch ChoicesTM : Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways.
Kelly Kohut, Kate Morton, Lesley Turner, Rebecca Foster, Diana Eccles, Claire Foster
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引用次数: 0
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.
期刊介绍:
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.