Background/Purpose: Patient education materials (PEMs) are essential for conveying disease and treatment information, empowering patients to actively participate in their care. However, PEMs for rare diseases often fall short, potentially worsening patients’ sense of helplessness. Research on the development and efficacy of PEMs in rheumatologic conditions is limited. For conditions like localized scleroderma, effective PEMs are critical. This study determined patients’ experiences with localized scleroderma and their preferences for educational materials, with the goal of improving the quality and relevance of PEMs for this condition.

Methods: We conducted a qualitative study with a grounded theory approach using focus groups with individuals diagnosed with localized scleroderma at a quaternary academic medical center in Texas. Participants were identified from a patient registry. Focus groups were co-facilitated by two investigators trained in qualitative methods and held at the outpatient clinical care building. Discussions covered localized scleroderma-related information-seeking behaviors, preferences for receiving information, and reactions to a draft PEM packet. Transcripts were double-coded by the lead investigator and a second researcher, with discrepancies resolved through discussion. Patterns and themes were identified across code reports using NVivo 14 for data analysis and management.

Results: Sixteen individuals across four focus groups participated between January and March 2024. Most (87.5%) participants were white and female and included adults with adult onset (87.5) disease and pediatric onset disease. Sessions averaged 68 minutes, including a short break. Findings were synthesized into three themes: localized scleroderma-related information-seeking behaviors, preferences for receiving information and communicating with clinicians, and reactions to the draft PEM packet.

Within localized scleroderma-related information-seeking behaviors, the following subthemes were identified: desire to learn about their health condition, general health information seeking behaviors, specific online search behaviors, dissatisfaction with available information and the role of online support groups and social media in information seeking.

Within preferences for receiving information and communicating with clinicians, the following subthemes were identified: desire for thoughtful, printed materials from clinicians, descriptions of materials from clinicians as factual, reliable information, and building patient-clinician relationship through communication.

Within reactions to the draft materials, the following subthemes were identified: Overall responses and emotions elicited, new or valuable information, missing information, and overall suggestions to improve patient care.

Conclusion: The study highlights the role PEMs play in building patient-clinician relationships and the current information seeking behaviors of patients with localized scleroderma. Insights from patient experiences can guide the enhancement of educational materials, ensuring they meet the specific needs of individuals with localized scleroderma.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/this-is-caring-enhancing-patient-education-materials-for-individuals-with-morphea-through-qualitative-inquiry/