Objective: To assess the impact of LupusLine during its pilot phase of operation by determining patterns of utilization and user satisfaction. LupusLine is a peer counseling service designed to provide ongoing emotional support from home to home by telephone appointment.
Methods: One hundred fifty-three respondents were surveyed, using a 72-item structured questionnaire administered over the telephone by interviewers separately trained and hired specifically for this purpose. The questionnaire was pilot tested on 10 volunteers with systemic lupus erythematosus (SLE), and a panel of related health professionals reviewed the questionnaire for face validity.
Results: Most users were women (94.5%) who had SLE themselves (87.5%) and who called the service because of recent changes in their physical functioning and reported feelings of depression and anxiety about their illness. Forty-one percent of respondents made 6 or more calls to their assigned peer counselor. Respondents reported high levels of satisfaction across 5 highly correlated measures, with 92% of callers reporting at least moderate satisfaction with the service. Over 60% of respondents who reported a change in 6 "feeling" categories attributed this change to using LupusLine. Fewer users reported a change in 4 specific behaviors since using the service, but more respondents attributed changes, when they occurred, to LupusLine.
Conclusions: Based on these initial findings, we believe that telephone networks similar to the LupusLine model may be able to offer substantial benefit to people coping with the complex, ongoing psychosocial challenges of SLE. Further, the at-home accessibility and low cost of such volunteer-based interventions may play an ever more needed role in the present health care environment.