Abstract
BACKGROUND: Health literacy is a key enabler of effective behavioural modification in chronic diseases. While patient reported outcome measures (PROMs) exists for patient with atrial fibrillation (AF), none address risk factors comprehensively. The aim of the study was to develop and qualitatively validate a disease specific PROM that incorporates knowledge on risk factors and assesses interactive and critical health literacy of people living with AF. METHODS: The 47-item Atrial Fibrillation Health Literacy Questionnaire (AFHLQ) was developed and validated through a qualitative research design. Expert and Consumer focus groups, each consisting of seven participants provided opinion. RESULTS: The 47-item questionnaire consists of 5 domains: (1) what is AF, (2) what are the symptoms of AF, (3) why do people get AF, (4) management of AF, and (5) what measures can slow or prevent the progression of AF. Recommendations resulted in several changes to the original 47 item list during the qualitative validation process: 13 original items were removed, and 13 new items were added. The response categories were also simplified from a Likert scale to "yes", "no" or "don't know". CONCLUSION: A 47-item AFHLQ instrument was developed and validated with modifications made through clinical expert and consumer opinion. This tool has a potential to be used to evaluate and guide interventions at a clinical and population level to understand and improve AF health literacy and outcomes.