‘I Live With Lynch. Cancer Worry Ebbs Into the Background, Then Something Brings It to the Fore.’ A Qualitative Interview Study Exploring How Lynch Syndrome Carriers Make Sense of Their Cancer Risks and Implications to Support Decision Making

Abstract

BackgroundLynch syndrome carriers (‘carriers’) are presented with complex, emotionally laden choices regarding management of increased genetic cancer risks. Decision aids encourage active involvement in values‐based health decisions. This paper aimed to address the research question: How do Lynch syndrome carriers make sense of their chances of developing cancer, and what are the implications for providing support with decision making about genetic cancer risk management?MethodsAdult carriers were recruited through a genetics service or involvement with Lynch Syndrome UK. Semi‐structured interviews explored lived experiences of carriers' access to care with a focus on decision support. Themes were constructed using framework analysis. These were developed into a conceptual model with recommendations for codevelopment of improved information and support including a tailored decision aid to complement integrated healthcare.ResultsTwenty participants included 12 women and eight men, half with a history of cancer. Six overarching themes were: (1) finding balance with Lynch; (2) living ‘on higher alert’; (3) managing uncertainty: ‘I've thought about it a lot’; (4) burden of responsibility: ‘It's on me’; (5) access to joined‐up care and support: ‘There's something missing’; and (6) influence/pressure from others.ConclusionsThis qualitative interview study provided in‐depth insights from Lynch syndrome carriers about their lived experiences, informed by their values. Recommendations to empower carriers to make sense of genetic cancer risks and support decisions included accessible, trusted information, educated healthcare professionals, shared decision making, and joined‐up integrated care pathways complemented by tailored decision aids.