Orphanet Journal of Rare Diseases | Medication Adherence in Behçet's Disease during the COVID-19 Pandemic

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This study integrates quantitative and qualitative methods to explore the determinants of medication adherence in Behçet's disease patients during the pandemic, highlighting how beliefs in the necessity of medication and concerns about side effects influence adherence behaviors, and emphasizing the importance of providing disease-specific guidance.

 

Literature Overview
This article, titled 'Exploring medication adherence in Behçet’s disease following COVID-19: a mixed-methods study', published in Orphanet Journal of Rare Diseases, reviews and summarizes the factors affecting medication adherence in Behçet’s disease patients during the pandemic, including beliefs about medication, trust in physicians, disease perception, and fear of the pandemic. The study employs mixed methods, combining questionnaire surveys with semi-structured interviews, to analyze the determinants of medication behavior and attitudes.

Background Knowledge
Behçet's disease is a rare autoimmune rheumatic condition characterized by oral ulcers, genital ulcers, joint pain, and uveitis. Treatment typically involves immunosuppressants and biologics. Medication adherence is crucial for managing disease activity and preventing acute flare-ups; however, research on adherence behavior in Behçet's disease remains limited. Previous studies suggest that beliefs about medication (e.g., necessity and concerns about side effects) are associated with adherence, and the pandemic may have exacerbated patients' concerns about immunosuppressive therapy, particularly regarding infection risks and reduced vaccine efficacy. This study is the first to examine medication adherence among Behçet’s disease patients in the UK context, using qualitative interviews to reveal how patients weigh the benefits and risks of medication during the pandemic, and highlighting the importance of personalized medical advice.

 

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Study Methods and Results
The study adopted a convergent mixed-methods design, including a quantitative questionnaire (n=89) and qualitative interviews (n=16). The questionnaire incorporated standardized scales such as the Brief Illness Perception Questionnaire (IPQ), Beliefs About Medicines Questionnaire (BMQ), Medication Adherence Rating Scale (MARS), Trust in Physician Scale, and Fear of COVID-19 Scale. Data were analyzed using Pearson correlations and multiple regression analyses. The qualitative component involved semi-structured audio interviews, analyzed using Reflective Thematic Analysis (RTA).

Key Findings and Insights

• Quantitative analysis showed that belief in medication necessity accounted for 16% of the variance in adherence, while concerns about medication explained a significant portion of the variance.
• Belief in medication necessity explained 24% of the variance in medication attitudes, indicating its strong influence on how positively patients view adherence.
• Qualitative analysis identified five themes: disease experience, medication experience, facilitators of adherence, barriers to adherence, and additional challenges introduced by the pandemic.
• Patients generally demonstrated good adherence to medication, as most still considered it essential for maintaining quality of life despite concerns about side effects.
• While the pandemic did not significantly affect overall adherence, some patients expressed hesitation due to fears that medication might reduce vaccine effectiveness or increase infection risk.
• Some patients experienced difficulties accessing medication during lockdown periods due to limited healthcare resources, which further affected their adherence behavior.

Implications and Future Directions
This study highlights the central role of patients' beliefs in the necessity of medication in Behçet’s disease management and reveals the psychological and behavioral impact of the pandemic. Future research should explore adherence differences across educational and racial backgrounds and develop targeted interventions to improve patient education and communication between healthcare providers and patients. The findings may also be relevant to the management of other rare diseases involving immunosuppressive therapies.

 

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Conclusion
Behçet’s disease patients generally exhibit good medication adherence, largely due to their understanding of the disease and trust in physicians. Although patients expressed concerns about side effects, most continued treatment to maintain quality of life. The pandemic introduced additional challenges, such as fears about infection risks and concerns about how medications might affect vaccine efficacy, which led to some hesitancy. The study recommends that clinicians provide disease-specific information to help patients better understand the benefits and risks of treatment during the pandemic, thereby maintaining adherence. Future studies should focus on adherence differences among patients from diverse socioeconomic and cultural backgrounds and explore interventions to enhance communication between patients and healthcare providers.

 

Emily Arden-Close, Fay Sweeting, Danielle Guy, Claudia Mallia, and Ala Yankouskaya. Exploring medication adherence in Behçet’s disease following COVID-19: a mixed-methods study. Orphanet Journal of Rare Diseases.