LAUSR

Background: Medication non-adherence is a significant problem among patients with rheumatic diseases. Research on adherence interventions in rheumatology is limited and disappointing, with studies using heterogeneous outcomes. Understanding these limitations is needed to inform the design of better interventions and research studies. Objectives: To describe researchers’ perspectives and experiences on adherence intervention research and outcomes in rheumatology. Methods: Semi-structured interviews using video conference were conducted with researchers who had been an investigator on an adherence study of any design in the past 10 years. Interviews were recorded and transcribed verbatim. Participants were asked about their experiences with conducting adherence research and perspectives on introduction of a core domain set of outcomes for adherence intervention trials in rheumatology. Data collection and thematic analysis were conducted iteratively, until saturation. Results: We interviewed 13 researchers from seven countries (Australia, Belgium, Canada, Netherland, Thailand, UK, and USA). A majority worked in academia (75%), specialized in epidemiology and/or health services research (62%) and had led between 2-5 adherence studies in the past five years (62%). Three themes were identified: 1) challenges in designing, conducting and evaluating adherence studies; 2) current outcomes in adherence intervention studies and their relevance; and 3) implementing a core domain set of outcomes for adherence intervention studies. Major challenges in conducting adherence research included inconsistent adherence terminology and measurement. Participants noted a lack of guidance on outcome selection and measurement when evaluating the effectiveness of an adherence intervention and indicated their preference for research to report adherence, intervention-specific, and health-related outcomes. Finally, implementing a core domain set of outcomes was thought to be challenging but valuable in strengthening the evidence (by facilitating meta-analysis), and improving clinical outcomes (by informing clinicians about the effectiveness of interventions). Conclusion: Adherence research in rheumatology has been hindered by lack of standardization and guidance on terminology, measurement and outcome selection. Our findings form the basis for recommendations for improving the design, conduct and evaluation of adherence intervention studies in rheumatology, particularly for developing a core domain set of outcomes to improve consistency and facilitate comparisons. Disclosure of Interests: Shahrzad Salmasi: None declared, Ayano Kelly: None declared, Susan J. Bartlett Consultant of: Pfizer, UCB, Lilly, Novartis, Merck, Janssen, Abbvie, Speakers bureau: Pfizer, UCB, Lilly, Novartis, Merck, Janssen, Abbvie, Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Lyn March: None declared, Allison Tong: None declared, Peter Tugwell: None declared, Kathleen Tymms: None declared, Suzanne Verstappen Grant/research support from: BMS, Consultant of: Celltrion, Speakers bureau: Pfizer, Mary De Vera: None declared