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133 A think-aloud interview study exploring patients’ understanding of personalised cancer risks and management options presented in a decision support website
  1. Kelly Kohut1,
  2. Kate Morton1,
  3. Lesley Turner3,
  4. Rebecca Foster1,
  5. on behalf of the CanGene-CanVar Patient Reference Panel,
  6. on behalf of the International Lynch Decision Aid Stakeholder Panel,
  7. Diana Eccles4,
  8. Claire Foster1
  1. 1Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK
  2. 2Clinical Genetics, St George’s University Hospitals NHS Foundation Trust, London, UK
  3. 3Patient and public collaborator
  4. 4Faculty of Medicine, University of Southampton, Southampton, UK

Abstract

Background Lynch syndrome (‘Lynch’) is the most common genetic cancer predisposition, leading to gene-, gender- and age-specific cancer risks and management options. Increased genetic testing is leading to more diagnoses of Lynch. Families are presented with complex choices. The study presented here was part of a larger project to codesign a patient decision aid website called Lynch Choices. Data are presented from think-aloud interviews with patients looking at a prototype version, aimed at answering the research questions: 1) How do patients understand the personalised cancer risks presented in Lynch Choices? 2) How can they be supported to make decisions in line with their values and preferences?

Methods Twenty patients with Lynch were interviewed, including people aged 22–67 years with a personal and/or family history of cancer. Patients looked at sections of the prototype website containing decision aids regarding taking aspirin or having a hysterectomy to lower cancer risk. Verbatim transcripts were analysed using the Person-Based Approach. A Table of Changes was used to track positive, neutral and negative comments. MoSCoW prioritisation determined changes for the website. Reflexive thematic analysis was performed on exemplar quotes from interview transcripts to unpack meaning about decision support needs.

Results Patients’ lived experience shared in interviews informed iterative refinement to a prototype patient decision support website, including changes to visual presentation of cancer risks. Needs and preferences in line with personal values were identified.

Discussion Patients with Lynch have varied lived experiences informed by their history and beliefs. Gaps in care were experienced, particularly with respect to information and decision support.

Conclusions This think-aloud interview study highlighted support needs to empower people with Lynch to obtain personalised, trusted, up-to-date information about cancer risks and choices, best navigated in partnership with health professionals through shared decision-making.

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