Orphanet journal of rare diseases · 2025
Exploring medication adherence in Behçet's disease following COVID-19: a mixed-methods study.
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Arden-Close Emily, Sweeting Fay, Guy Danielle, Mallia Claudia, Yankouskaya Ala
Аннотация
OBJECTIVES: Identify predictors of and explore the decision-making process regarding medication adherence in Behçet's Disease, a rare autoimmune disease.
METHODS: A mixed methods study (cross-sectional plus qualitative) conducted between January and March 2021. In the quantitative study, participants (n = 89, age 25-69) completed online questionnaires about demographics, medication adherence (implementation; taking medicine as required), beliefs about medicines, illness perceptions, trust in physicians and fear of COVID-19. Data were analysed using correlations and multiple regressions. In the qualitative study, semi-structured audio interviews were conducted with participants (n = 16; age 28-66) via Zoom. Data were analysed using inductive thematic analysis.
RESULTS: Belief in necessity of medicines and concerns about medicines explained 16% of the variance in self-reported adherence to medication, and belief in necessity of medicines explained 24% of the variance in attitude to adherence. Qualitative analysis identified five main themes: experience of illness (excellent understanding of illness, advocating for own care), experience of taking medication (balancing act, part of routine), facilitators to taking medication (doctor recommended, helped symptoms, maintained quality of life), barriers to taking medication (not helping with symptoms, fearing certain medicines, concerns about side effects, difficult to take as prescribed) and additional barriers caused by COVID-19 (fear of COVID-19, concerns medications would increase risk of COVID-19 and decrease response to vaccines, difficulties obtaining medicines).
CONCLUSIONS: Adherence to Behçet's Disease medication was generally good. Concerns participants had about medicines included sometimes not noticing the difference when they stopped taking medicines, fears about some medicines and concerns about side effects. However, based on their excellent understanding of the disease and trust in doctors, these concerns were balanced against the belief that medication was necessary to help their symptoms and maintain quality of life. To address concerns and ensure patients take medicines as prescribed, they need to be provided with up-to-date condition-specific advice.
METHODS: A mixed methods study (cross-sectional plus qualitative) conducted between January and March 2021. In the quantitative study, participants (n = 89, age 25-69) completed online questionnaires about demographics, medication adherence (implementation; taking medicine as required), beliefs about medicines, illness perceptions, trust in physicians and fear of COVID-19. Data were analysed using correlations and multiple regressions. In the qualitative study, semi-structured audio interviews were conducted with participants (n = 16; age 28-66) via Zoom. Data were analysed using inductive thematic analysis.
RESULTS: Belief in necessity of medicines and concerns about medicines explained 16% of the variance in self-reported adherence to medication, and belief in necessity of medicines explained 24% of the variance in attitude to adherence. Qualitative analysis identified five main themes: experience of illness (excellent understanding of illness, advocating for own care), experience of taking medication (balancing act, part of routine), facilitators to taking medication (doctor recommended, helped symptoms, maintained quality of life), barriers to taking medication (not helping with symptoms, fearing certain medicines, concerns about side effects, difficult to take as prescribed) and additional barriers caused by COVID-19 (fear of COVID-19, concerns medications would increase risk of COVID-19 and decrease response to vaccines, difficulties obtaining medicines).
CONCLUSIONS: Adherence to Behçet's Disease medication was generally good. Concerns participants had about medicines included sometimes not noticing the difference when they stopped taking medicines, fears about some medicines and concerns about side effects. However, based on their excellent understanding of the disease and trust in doctors, these concerns were balanced against the belief that medication was necessary to help their symptoms and maintain quality of life. To address concerns and ensure patients take medicines as prescribed, they need to be provided with up-to-date condition-specific advice.