Navigating the Autoimmune Journey: How Patient Psychosocial Factors Drive Engagement & Adherence
Evidence for Change Series: Immunology in Focus
Despite advances in autoimmune therapies, our global survey of 152 patients reveals that emotional challenges—particularly receiving and accepting diagnosis—create significant barriers to treatment engagement and adherence. Our research highlights that while treatment-related tasks are rated as less difficult, psychological factors fundamentally influence how patients navigate their autoimmune journey.
Understanding these emotional components is crucial for developing effective patient support programs that address both psychological barriers and practical treatment guidance, rather than focusing solely on medication adherence. Healthcare providers and pharmaceutical companies developing self-administered therapies must incorporate these psychosocial insights to create innovative support solutions that maintain optimal engagement throughout the autoimmune journey.
Evidence for Change Series: Immunology in Focus
Despite advances in autoimmune therapies, our global survey of 152 patients reveals that emotional challenges—particularly receiving and accepting diagnosis—create significant barriers to treatment engagement and adherence. Our research highlights that while treatment-related tasks are rated as less difficult, psychological factors fundamentally influence how patients navigate their autoimmune journey.
Understanding these emotional components is crucial for developing effective patient support programs that address both psychological barriers and practical treatment guidance, rather than focusing solely on medication adherence. Healthcare providers and pharmaceutical companies developing self-administered therapies must incorporate these psychosocial insights to create innovative support solutions that maintain optimal engagement throughout the autoimmune journey.
Optimizing Immunology Patient Support
Our findings reveal new and current insights into what people living with autoimmune conditions find the most difficult across their health journey. 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 are required that specifically address the psychosocial aspects of navigating an autoimmune condition. 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 health outcomes across the patient journey. To achieve this, we conduct primary research to gain a deeper understanding of the patient experience and gather insights that directly inform our solutions.
As part of our Evidence for Change research series, we surveyed 152 individuals with autoimmune conditions across the globe to explore their experiences throughout the patient journey.
Exploring Experiences From Pre-Diagnosis to Treatment
- Participants were asked to rate the difficulty of 10 key self-management aspects across the patient journey using a 5-point Likert scale, from 5 = Extremely Difficult to 1 = Not At All Difficult.
- These questions aimed to assess the perceived difficulty of each aspect and identify areas where support solutions can have the greatest impact.
- Participants were also invited to share advice based on their experiences, providing valuable insights into the types of support that can be incorporated into patient support solutions across the journey.
- For more information on the sample characteristics, click here.
Emotional Burden: The Greatest Challenge for Patients
- Patients living with autoimmune conditions identified the most challenging aspects of their journey as those related to coming to terms with the condition—particularly receiving the diagnosis, accepting it, and coping with negative emotions. These stages reflect the significant emotional and psychological burden, as well as the uncertainty and adjustment involved.
- Adjusting to lifestyle changes and understanding the condition were rated as moderately difficult, requiring both cognitive and behavioral adjustments as patients integrate new information and adapt their daily lives.
- In contrast, treatment-related stages (making decisions, starting, and continuing treatment) and talking to HCPs and others about the condition were rated as only slightly difficult, though still challenging.
- Overall, the findings show that the greatest burden for patients lies in emotionally processing the condition, while treatment adherence and communication, though still significant, are generally less difficult from the patient’s perspective.
No matter the degree of difficulty experienced by patients throughout their journey, many engaged with Patient Support Programs—highlighting that everyone can benefit from support, not just those facing the greatest challenges.
What does this mean for Patient Support Solutions?
- These findings highlight the need for patient support, clinical trials, and HCP education to address the psychosocial challenges of diagnosis, acceptance, and emotional coping. As the most burdensome aspects of the journey, these experiences strongly influence self-management and adherence. Effective support must reflect this reality to improve engagement and outcomes.
- Patient support programs should not only focus on medication adherence but also address emotional and psychological barriers. Successful programs must combine emotional support with practical treatment guidance to help patients manage both the physical and emotional aspects of their condition.
- In clinical trial design, understanding the psychosocial aspects of the patient journey can lead to more patient-centered approaches, capturing both clinical and emotional outcomes for a fuller patient experience.
- Healthcare provider education should incorporate these insights to develop resources to help HCPs better address the emotional complexities of autoimmune conditions. This will enable HCPs to offer more comprehensive care, improving patient adherence and long-term engagement with self-management.