Health Literacy Varies According to Different Background Disease Natures and Characteristics of Participants for Patient Support Groups

Abstract

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.