Introduction: Patient support groups (PSGs) should be designed according to the backgrounds of participants and the nature of their diseases. Using health literacy as an outcome indicator for PSGs is rare. Methods: All questionnaires (Mandarin Multidimensional Health Literacy Questionnaire, MMHLQ) were collected from eight PSGs to evaluate the health literacy of participants. Background data of participants were also collected, including patient or family, age, and first-time participation or not. Results: A total of 458 questionnaires were collected from eight PSGs. The diseases were: autoimmune disease (systemic lupus nephritis (SLE), malignancy (head and neck cancer (HNC), chronic disease (diabetes mellitus or DM), chronic kidney disease (CKD), hemodialysis and chronic obstructive pulmonary disease (COPD), genetic disease (autosomal dominant polycystic kidney disease (ADPKD), and degenerative disease (osteoporosis). For vasculitis (42.21 ± 16.49 years old for SLE) and genetic disease (48.95 ± 17.58 years old for ADPKD), participants were younger. More significant differences between first-time participation and MMHLQ scores were found in disease of osteoporosis, CKD, COPD, and hemodialysis. More significant differences between role of participation (patients themselves or family) and MMHLQ scores were found in SLE, ADPKD, hemodialysis, and CKD. More significant differences between age (elderly or not) and MMHLQ score were found in HNC, DM, CKD, COPD, and osteoporosis. Conclusion: Background data of participants varied across different diseases. Different disease natures and patient background statuses should therefore demand different designs in PSG. MMHLQ before PSGs can be used to help to improve the PSG curriculum on the health literacy of patients.

Supplemental Digital Content is available in the text

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.