Abstract
Heart valve disease refers to a number of conditions where the valves within the heart fail to optimally direct blood flow, and is a common and increasing problem globally. No disease-specific questionnaire measuring health-related quality of life across the lifespan of people with heart valve disease currently exists, limiting the ability to accurately identify beneficial treatments. This thesis, therefore, describes a three-phase project aiming to generate a questionnaire measuring health-related quality of life in heart valve disease, called the VALVQ. In the first phase, individuals with heart valve disease as well as family members and clinical experts were interviewed to generate a 64-item questionnaire that comprehensively reported indicators of quality of life. The second phase consisted of pilot-testing, allowing the generation of a 59-item questionnaire for deployment in next phase. In the third phase, 290 individuals with heart valve disease completed the draft VALVQ. Analyses including factor analysis and item response theory were sequentially applied to remove items. As part of the development process, it was discovered that fatigue is a key determinant of quality of life in heart valve disease and may be under-considered clinically We encourage consideration of the role of fatigue in clinical guidelines of management of heart valve disease. Finally, we provide a 12-item disease specific quality of life instrument, the VALVQ, to be validated in future studies.