Abstract

Background: Peer Approaches to Lupus Self-Management (PALS) was a peer support program tailored to the population most affect by systemic lupus erythematosus (SLE); African American women. Methods: Compliance in the PALS study was measured as weekly phone call sessions completed by each mentoring pair. Additional compliance data were collected from other interventions providing peer support and education with the purpose of improving quality of life and/or disease activity. Compliance data were compared to determine factors associated with higher levels of compliance in this disease population. Results: PALS proved to be a highly acceptable intervention with regard to the counseling, support, and education extended to lupus patients. Compliance data from the program showed that it was highly accessible with 100% of users in the study period completing all of the weekly mentoring sessions. Compared to other interventions, which reported compliance rates ranging from <50-82%, patients in the PALS program were much more compliant to protocols and schedules. PALS compliance was most similar to that of the LupusLine® peer support telephone program, which achieved 97% compliance. Conclusions: Despite limitations, results indicate patient satisfaction, positive impact, and increased compliance with the approach of the PALS study. Other programs in similar populations struggle with compliance, whereas PALS and LupusLine® users were highly compliant. A factor common to both programs was the use of trained peers to deliver support via telephone calls, possibly indicating that this delivery method may be particularly effective for promoting compliance in this population.

Keywords: Systemic lupus erythematosus; Peer mentoring; Program evaluation; Social support; African American; Women; Compliance