High Rates of Treatment Nonadherence in Autoimmune Conditions
Evidence for Change Series: Immunology in Focus
Rates of nonadherence among autoimmune patients can reach up to 84%, presenting a critical challenge to effective long-term treatment. Contrary to popular belief, our research shows that factors like age or gender have no significant impact on adherence behaviors. Instead, clinical factors, such as the specific condition, method of administration, and medication dosing frequency, play significant roles in whether patients are adherent to their prescribed treatment regimen or not.
When patients do not follow their treatment plans, the effects go beyond individual health outcomes. Inconsistent therapy adherence directly correlates with increased disease activity and healthcare utilization. These findings emphasize the need for personalized interventions that address both practical barriers and psychological factors, rather than focusing solely on medication reminders or regimen simplification. Optimal support for autoimmune patients should combine easy-to-use technology and behavioral science-based interventions for sustained and meaningful improvements in long-term adherence metrics and better health outcomes.
Evidence for Change Series: Immunology in Focus
Rates of nonadherence among autoimmune patients can reach up to 84%, presenting a critical challenge to effective long-term treatment. Contrary to popular belief, our research shows that factors like age or gender have no significant impact on adherence behaviors. Instead, clinical factors, such as the specific condition, method of administration, and medication dosing frequency, play significant roles in whether patients are adherent to their prescribed treatment regimen or not.
When patients do not follow their treatment plans, the effects go beyond individual health outcomes. Inconsistent therapy adherence directly correlates with increased disease activity and healthcare utilization. These findings emphasize the need for personalized interventions that address both practical barriers and psychological factors, rather than focusing solely on medication reminders or regimen simplification. Optimal support for autoimmune patients should combine easy-to-use technology and behavioral science-based interventions for sustained and meaningful improvements in long-term adherence metrics and better health outcomes.
Optimizing Immunology Patient Support
Our findings reveal new and current insights into the factors that impact nonadherence in autoimmune patients. They demonstrate the need to provide targeted, personalized, and holistic patient support for those with autoimmune conditions.
As part of immunology patient support programs, interventions should be designed using the latest behavioral science and health psychology insights to help patients integrate treatment regimens into routines and motivate them to continue taking their treatment as prescribed. Optimizing immunology patient support programs this way will enable and empower those living with autoimmune conditions to Change for Good
To explore these findings and their implications for patient engagement strategies, including key advice patients would offer to others for managing their condition, contact Dr Kate Perry—our Global Head of Behavioral Science and Lead Researcher—for a 30-minute online discussion: Click Here to contact Kate and request a meeting and receive a free copy of our study report.
Read about our expertise & behavioral science insights.
Introduction
At Atlantis Health, we are committed to incorporating the patient voice into our solutions to improve patient outcomes, including optimizing treatment adherence. As part of that commitment, we conduct primary research to gain a deeper understanding of the patient experience.
We used an observational mixed-methods design, incorporating psychometrically validated questionnaires and open-ended questions to explore patient experiences in detail.
This year, as part of our Evidence for Change research series, we surveyed 152 individuals across the globe who are living with autoimmune conditions to gain insights into their experiences throughout the patient journey, including treatment experiences and adherence.
More information on the study methodology and the sample characteristics can be found here.
Extent of Nonadherence
Treatment nonadherence in this sample was high, with just over 80% of participants reporting they had not taken their prescribed medication at some point.
This falls at the upper end of nonadherence rates in autoimmune research found in published studies, which range from 7% to 84%.1
These findings highlight a clear need for greater support in helping autoimmune patients adhere to their treatment plans.
There is a significant opportunity—and an urgent need—for targeted interventions and investment in patient support programs to address nonadherence.
Clinical Factors & Nonadherence
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There were no clear differences in nonadherence based on age, gender, location, or living situation—meaning nonadherence can affect anyone, regardless of background.
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Nonadherence varied based on condition and treatment-related factors, including the type of autoimmune diagnosis, how the treatment was administered, and dosing frequency.
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The highest rates of nonadherence were seen in people with ankylosing spondylitis, psoriasis, and rheumatoid arthritis, showing an even greater need for more support in these conditions.
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People taking medications at home were more likely to be nonadherent compared to those receiving treatment in clinics or hospitals, reinforcing that at-home care needs more support.
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Oral medications were linked to higher nonadherence than injected or infused treatments, indicating that how a treatment is taken or administered matters.
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Nonadherence rates varied across dosing frequencies, though no clear linear pattern emerged.
Exploring Nonadherence & Dosing Frequency
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The highest nonadherence was seen among patients taking medication more than three times a day and once every two days.
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While we cannot say that adherence simply decreases as dosing frequency increases, the data suggests that nonadherence tends to rise when treatment routines are harder to fit into daily life.
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Overall, dosing schedules that are either infrequent or easy to incorporate into everyday routines were linked to better adherence.
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While choosing medications with less frequent dosing is a useful strategy often employed by healthcare professionals to support adherence, it is equally important to help patients integrate treatment into their daily routines.
Opportunity & Implications for Intervention
Nonadherence to prescribed autoimmune treatments is prevalent, with over 80% of our sample reporting some level of nonadherence. This underscores a significant need for targeted support to help patients and their loved ones improve adherence. Less frequent dosing can support adherence, but it is only part of the solution. Helping patients integrate treatment into daily life is equally important.
Practical tools like reminders and habit-stacking can make routines easier—but lasting adherence often depends on more. When patients accept their condition, trust the treatment, and feel motivated, they’re far more likely to make it a consistent part of their lives.
References
- van Mierlo, T., Fournier, R., & Ingham, M. (2015). Targeting medication non-adherence behavior in selected autoimmune diseases: A systematic approach to digital health program development. PLoS One, 10(6), e0129364.