Abstract 13728: Generation of a Patient-Reported Outcome Measure of Quality of Life in Heart Valve Disease

Abstract

Introduction: Heart valve disease (HVD) is common globally, yet there is no questionnaire measuring quality of life (QOL) across the lifespan of HVD. This limits assessment of changes in QOL in response to intervention in HVD. Research Question: What are all features of QOL in lived HVD, and how may these be best selected between to create a well-performing questionnaire? Goal: We aimed to generate a patient-reported outcome measure of QOL in common and significant types of HVD: aortic stenosis, mitral regurgitation, mitral valve disease in rheumatic heart disease, and valve repair/replacement. Methods: Participants were recruited from echocardiographic databases in two tertiary surgical centres in three phases. Phase One described QOL in interviews; Phase Two pilot-tested the questionnaire; and Phase Three selected between items using item distributions, exploratory factor analysis (EFA), and item response theory (IRT) to create the final questionnaire, called the Valve Quality of life (VALVQ). Results: In Phase One, 34 people with HVD, three family members, and five clinical experts were interviewed. Key features of QOL were physical capacity relative to ‘normal’, symptom interpretation causing reduced activity, and fatigue. In Phase Two, we showed in 62 participants that the resulting questionnaire - and its semantic differential item format - was functional. In Phase Three, 290 participants returned questionnaires. Items were removed for poor distributions, then EFA identified ‘physical capacity’ and ‘disease perception’ as key factors. A two-parameter Graded Response Model was used to generate the final 12-item VALVQ, which is shown in the attached table. Conclusion: Through application of sequential analyses across three phases, we generated the final 12-item VALVQ. It has two factors - physical capacity and disease perception - and can be deployed for future research on QOL in HVD, whether before or after intervention and across multiple forms of HVD.