Successful living with autoimmune arthritis: an innovative disease self-management program based on self-determination theory

Kimberly Ann Steinbarger

doi:10.17918/00000764

Objective. The course of autoimmune arthritis varies by individual and can cause significant and progressive decline in physical function, mental health, social independence, and financial stability. This disease process has also been linked to early mortality, often due to complications from infections or cardiovascular disease. While intervention from health professionals is paramount for this population, education is also imperative to enable patients to collaborate successfully with the healthcare team. Persons with autoimmune disease require education about the disease process and self-management techniques to develop self-efficacy in managing their disease within their daily lives. The first aim of this mixed methods study was to develop and evaluate a disease self-management program based on Self-Determination Theory (SDT) for participants with autoimmune arthritis. The second aim was to evaluate the participants' outcomes, with emphasis on any behavioral changes noted after attending the program. Methods. Four adult participants with physician-diagnosed arthritis attended a 6-session disease self-management program. Eight content topics were developed and delivered over the 6-week period by an interprofessional team consisting of the primary instructor and five student instructors (three physical therapy students and two pharmacy students). The content was evaluated using weekly session evaluation forms, as well as semi-structured post-program interviews conducted individually with the participants, and collectively with the student instructors. Participants' outcomes were measured using five outcome measures validated for this population; namely, the Health Assessment Questionnaire Disability Index (HAQ-DI); Arthritis Self-efficacy Scale, 8-item version (ASES); Patient Knowledge Questionnaire (PKQ); Short Form 36 Health survey (SF-36); and McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), which were completed by the participants both before and after the program. Results were analyzed using the Wilcoxon signed ranks test with a significance set at 0.10. One month after the program ended, participants completed a semi-structured interview to explore their thoughts about the program and any health behavior changes noted. Qualitative data were analyzed using generic qualitative inquiry and the three tenets of SDT: autonomy, competence, and relatedness. Results. Participants found the content helpful, the delivery effective, and the program acceptable, even though they had been living with their arthritic conditions for several years. Both participants and students felt the ongoing program was feasible, however, they suggested a larger group, attempting to recruit some younger people for the group, and adding guest speakers. Participants' suggestions for additional topics included involving a recently graduated rheumatologist (suggestive of being more up to date on recent findings), information about Cannabidiol (CBD) supplements, and the relationship between diabetes and rheumatic disease. Only one of the five standardized measures, the PKQ, demonstrated a difference (p = 0.07) from the beginning to end of the program with an effect size of r = .65. The MACTAR scores did not reach significance, but the effect size was r = .57. The 1-month, post-program qualitative interviews revealed positive health behavior changes, including self-selected physical activities, advocacy for self, knowledge seeking, and acquisition of new adaptive or exercise equipment, all related to the tenets of SDT. Conclusion. Because of the small, homogenous sample size, participant outcomes cannot be extrapolated to the population at large, but the qualitative results demonstrate that this type of program, based on SDT, is both feasible to offer again with modifications, and acceptable to the participants. This program shows promise in facilitating positive behavior changes in individuals with autoimmune arthritis. Keywords: arthritis, self-determination theory, disease self-management, rheumatic disease

Successful living with autoimmune arthritis: an innovative disease self-management program based on self-determination theory

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Successful living with autoimmune arthritis: an innovative disease self-management program based on self-determination theory

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