Pulmonary Hypertension Support Group: A Year in Review

Abstract

A Pulmonary Hypertension (PH) support group fills a need for both patients and caregivers. The initial development of a support group community can be challenging. Our center sought to create a PH support group that met the needs of this unique community as well as see if attendance at support group improved adherence to treatment. The PH team sought to use a patient centered approach throughout development and continuation of the support group. Motivational interviewing using standard scripting helped determine best meeting times, spaces and topics. Post-initiation, a non-experimental design using a purposeful sample was used. A nurse researcher developed a survey determining what topics the participants were interested in, how they heard about the support group and benefits the meetings provided. Support group meetings were held quarterly and were open to all patients and caregivers, regardless of PH center. Attendance at quarterly PH clinic appointments was then retrospectively reviewed and compared between patients who had attended support groups and those who had not. After compiling the initial motivational interviews, the support group's timing was adjusted and food was provided to attendees. All of our participants stated that the support group was beneficial to them. We were given valuable feedback on improvement: Better temperature controlled room, parking passes, speaker system, PP slides, and more frequent meetings. Most importantly, our research demonstrated that those of our patients who attended one or more support group meetings within one year showed 88% compliance with follow up clinic visits, compared with 59% compliance for those patients who did not attend a support group meeting. This study demonstrated that attendance of support group meetings were correlated to the pulmonary hypertension patient's clinic attendance. This may suggest that support groups can positively impact patient's lives by helping patients to stay motivated to manage chronic conditions and stick to treatment plans. The potential of PH support groups should be further studied for their impact on overall quality of life in PH patients.