Abstract
Background: Although multiple studies have examined various clinical aspects of diagnosis, treatment, and management of patients with aortic stenosis (AS), there are limited data collected from patients regarding experiences related to symptoms, diagnosis, treatment decisions, and personal impacts of living with AS. Methods: Adults aged ≥40 years diagnosed with AS were recruited from national patient networks and through professional recruiters. Participants were separated into 3 cohorts: medically managed, surgical aortic valve replacement (SAVR), and transcatheter aortic valve implantation (TAVI). Semi-structured interviews were conducted via teleconference using open ended questions and probes. Interview recordings were transcribed verbatim and inductive thematic analyses were conducted. Results: A total of 45 interviews were conducted (15 per treatment group). The majority of participants were male (55.6%, 25 of 45), white (95.6%, 43 of 45), and non-Hispanic (93.3%, 42 of 45). Median time from symptom onset to diagnosis was 6 months (IQR: 1-12). Participants noting longer times to diagnosis reported mild symptom onset and experiences of misdiagnoses. Some participants described that healthcare professionals explained the AS diagnosis clearly and understandably, while others left the encounter confused with unanswered questions. Participants described a strong reliance on their healthcare professionals to guide them through their treatment decisions, which were influenced by the effects of anticoagulation, future valve interventions, and recovery. Medically managed participants reported making lifestyle modifications to manage AS symptoms, including chronic anxiety and fatigue. In contrast, participants who underwent TAVI or SAVR reported positive sentiments, including gratitude and freedom to live life normally following the procedure. Conclusions: The diverse but challenging experiences of individuals with AS suggest that increasing both the availability and use of patient resources may improve patients’ understanding of AS and facilitate informed treatment decisions. Common reports of delayed AS diagnosis also indicate a need for additional healthcare professional education on referral to a heart valve team.
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