Background: Little has been done regarding the research on quality and quantity of patient support groups (PSGs) and how they can be improved. Here, we present three-year experiences of a quality improvement (QI) program of our PSGs. Methods: We launched earlier on a three-year project to improve our PSGs, including the number and quality of curricula. Data were collected on the number of PSGs, curricula, and participants. Results: In the first year, we organized relevant resources of our hospital and established a standard protocol for applying financial support and reporting the results. In the second year, we elected “the best patient” to promote sense of honor and better peer supports. In the third year, we surveyed through questionnaires participants’ health literacy to improve their feedback. Competitions and exhibitions of achievements were held each year to share results of every PSG. Finally, we had increased the volume of participation of patients and family over these three years (3968, 5401 (+35.5%) and 5963 (+50.3%)). Participation of staff also increased significantly (489 and 551 (+12.7%)). Furthermore, more interdisciplinary curricula were generated, with fewer doctors (38.2% to 29%), but greater numbers of the following: nurses (4.9% to 17.4%), nurse practitioners (0.4% to 14.5%), medical laboratory scientists (2.5% to 16.3%), social workers (4.7% to 41.7%), and teachers from outside (0% to 1.8%). Conclusion: In this first study on QI efforts on PSGs, we enlisted a core change team, drew a stakeholder map, and selected an improvement framework with good results.
Sociocultural challenges in patients with myositis and the unmet need for patient support groups: Perspectives from North India
