Addressing Reasons for Treatment Nonadherence in Autoimmune Conditions
Evidence for Change Series: Immunology in Focus
Intentional nonadherence represents a complex behavior where individuals consciously choose not to follow prescribed medication regimens. This phenomenon transcends simple forgetfulness or practical barriers such as cost or access to medication.
When examining intentional nonadherence through a patient-centric lens, we observe this behavior often emerges from a range of personal reasons. For example, patients may strategically skip doses to manage side effects that interfere with important life activities, or test whether they still 'need' the medication.
Understanding and addressing patient perceptions and concerns, while also providing evidence-based tools for medication and side effect management, are key to improved adherence for better long-term health outcomes.
Evidence for Change Series: Immunology in Focus
Intentional nonadherence represents a complex behavior where individuals consciously choose not to follow prescribed medication regimens. This phenomenon transcends simple forgetfulness or practical barriers such as cost or access to medication.
When examining intentional nonadherence through a patient-centric lens, we observe this behavior often emerges from a range of personal reasons. For example, patients may strategically skip doses to manage side effects that interfere with important life activities, or test whether they still 'need' the medication.
Understanding and addressing patient perceptions and concerns, while also providing evidence-based tools for medication and side effect management, are key to improved adherence for better long-term health outcomes.
Optimizing Immunology Patient Support
Our findings reveal new and current insights into the intentional reasons why autoimmune patients choose not to adhere to prescribed medication regimens. 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 effectively address intentional reasons for nonadherence. 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.
The Problem of Nonadherence
Each year, as part of our Evidence for Change Research Series, we conduct a global online survey to explore the experiences and perspectives of people living with a long-term health condition.
This year, we surveyed 152 patients worldwide who are living with an autoimmune condition. You can find more detail on the study methodology and the sample characteristics here.
A key finding this year was the high rate of treatment nonadherence, with just over 80% of participants reporting they had not taken their prescribed medication at some point.
This falls at the upper end of reported nonadherence rates in autoimmune research, which range from 7% to 84%1 and highlights a clear need for greater support in helping autoimmune patients adhere to their treatment plans.
However, to effectively address treatment nonadherence, we must understand the reasons why it is happening.
Intentional vs Unintentional Nonadherence
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Nonadherence is a complex behavior, and reasons for nonadherence are typically categorized as intentional or unintentional
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Unintentional nonadherence stems from practical barriers such as forgetting doses or treatment costs. Patient support programs often focus solely on these practical challenges, with many effective strategies available.
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However, this narrow focus can overlook intentional nonadherence—a deliberate decision not to take treatment, often shaped by personal beliefs or perceptions.
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This study specifically explored intentional nonadherence using the psychometrically-validated Intentional Non-Adherence Scale (INAS)2 to better understand patients’ underlying beliefs.
Patients' Top 3 Reasons for Nonadherence
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The top three most endorsed reasons for nonadherence are:
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“Because I want to think of myself as a healthy person again”
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“Because I want to lead a normal life again”
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“Because I want to give my body a rest from the medicine”
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These intentional reasons for nonadherence reflect a deeper desire among people with autoimmune conditions to reclaim a sense of normalcy, independence, and freedom from the constant reminders of illness and treatment— highlighting the emotional and identity-related challenges of long-term condition management.
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These reasons show just how much living with an autoimmune condition can impact how people feel about themselves and their lives—it’s not just physical, it’s emotional too.
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Earlier findings from this study also showed that the emotional toll of an autoimmune diagnosis is a big part of the day-to-day struggle for many patients.
Key Themes to Address in Adherence Interventions
When we look at the reasons overall, we identified two key themes that are important to address in efforts to optimize adherence and reduce barriers for patients.
The themes identified are: Doubting Treatment and Disruption to Self & Daily Life.
Interestingly, similar themes were also observed in our 2024 oncology patient sample, suggesting shared challenges across conditions. This reinforces the fact that common themes in nonadherence exist across conditions, but it's the individual expression of these themes that matters most—and exploring this is essential for tailoring meaningful support.
Theme 1: Doubting Treatment
This theme reflects a sense of uncertainty, skepticism, or caution about the treatment itself.
Patients weigh the necessity of medication against concerns about its impact on their bodies or doubts about whether it's the right choice for them.
Includes reasons such as:
Theme 2: Disruption to Self & Daily Life
This theme captures how treatment routines and the identity of being a patient can interfere with everyday life and people’s sense of self.
It highlights a desire to feel normal, independent, and free from constant reminders of illness.
Includes reasons such as:
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.
The themes identified provide key insights into the beliefs, emotions, and life factors driving intentional nonadherence, offering a valuable foundation for creating more effective, personalized interventions.
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.
- Weinman, J., Graham, S., Canfield, M., Kleinstäuber, M., Perera, A. I., Dalbeth, N., & Petrie, K. J. (2018). The Intentional Non-Adherence Scale (INAS): Initial development and validation. Journal of Psychosomatic Research, 115, 110-116. doi: 10.1016/j.jpsychores.2018.10.010