Background/Purpose: Self-management is an effective strategy for improving health outcomes among patients with chronic conditions such as rheumatic diseases. Patient education about self-management among patients with rheumatic disease in Uganda is limited. In collaboration with The Arthritis Association of Uganda (TAAU), a fully registered, patient-led NGO, this pilot study aimed to evaluate the feasibility of developing and implementing a virtual patient education series and collecting information regarding self-management.

Methods: Four virtual sessions were developed together with direct input from the Ugandan rheumatology patient perspective. Adults ≥18 years of age receiving care at the Mulago Hospital Rheumatology Clinic were invited to participate. Patients were asked to complete a survey at enrollment regarding demographic and clinical characteristics and self-management readiness via the validated 13-item Patient Activation Measure (PAM) tool (see table), and an Exit Survey to re-assess the PAM. Feasibility and acceptability metrics were collected including the ability of the study team to develop and deliver all sessions as planned, attendees per session, attendees who returned for subsequent sessions, attendees who completed each of the surveys, barriers that were faced, and patient satisfaction.

Results: The four topics selected and developed, based upon the experience and input of TAAU, encompassed: Introduction to Arthritis, Exercise & Nutrition, Women’s Health & Rheumatic Disease, and Understanding My Disease & Rheumatology Medications. Sessions were delivered over Zoom from 1/2023 – 5/2023, approximately every other week prior to the start of the morning clinic. Each topic was presented twice to maximize patient participation. Local team members simultaneously interpreted content into Luganda. An average of 21 participants (range 17-24) attended each session (mean age 48±14 years, 72% women). Reported diagnoses included rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus, crystalline arthritis, psoriatic arthritis, and “not sure”. A total of 33 Enrollment Surveys and 41 Exit Surveys were collected. Mean raw PAM scores were 36.9±3.8 at enrollment and 41.5±2.2 at exit. Challenges encountered and discussed included language barriers, adapting medical terminology to health literacy levels, and administrative/logistical hurdles (internet connection reliability, preparing and managing hard copies of the surveys, accessing the meeting space, inclement weather, accommodating interest in remote participation). Patients reported sessions were useful, appropriate and engaging, and expressed a strong interest in additional future sessions.

Conclusion: In this pilot study, we demonstrated the feasibility of developing and implementing an educational series focused on self-management for patients with rheumatic diseases and collecting associated measures. Our findings will directly inform the design and delivery of future expanded interventions on this topic. Next steps will include formal cultural adaptation and validation of the 13-item PAM, incorporation of remote participation, and direct assessment of knowledge gaps, and self-management practices.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/developing-and-implementing-a-pilot-educational-intervention-to-improve-readiness-for-self-management-among-patients-with-rheumatic-diseases-in-uganda/