Barriers and promoters to adapting research findings to clinical care in hereditary angioedema in the United States: A qualitative study

Treatment options for hereditary angioedema (HAE) have evolved due to discoveries in basic and clinical research. HAE clinical guidelines emphasize optimizing quality of life through attack prevention strategies that include long-term prophylaxis. We sought to identify barriers to and promoters of research translation into HAE clinical practice that may inform efforts to improve patient care. We interviewed US allergy/immunology clinicians who completed an online continuing medical education activity on HAE or were identified through healthcare provider directories. Interviews focused on clinicians’ experiences translating HAE research results into clinical care. Deidentified interview transcripts were coded and analyzed to detect emergent themes using Dedoose software. Thematic analysis of 15 interviews showed that insurance prior authorization for HAE medications, including those for long-term prophylaxis, was perceived as the biggest barrier to evidence-based care. Other prominent barriers were laboratory testing difficulties, time constraints, and deficits in both primary care provider and patient understanding of HAE. Promoters of research translation included availability of medication samples, route/frequency of drug administration, and shared decision-making. Clinicians used different resources to learn about HAE, including online chat rooms. None of the clinicians used a validated instrument to assess HAE-related quality of life. Perceptions of the usefulness of HAE clinical guidelines were mixed. A range of factors act as barriers and promoters to research translation into clinical care for patients with HAE. Our findings have implications for interventions to enhance the delivery of evidence-based care for patients with HAE.