OP0184-PARE HOW REPRESENTATIVE ARE PATIENT REPRESENTATIVES? HEALTH LITERACY SCORES AND PROFILES OF REPRESENTATIVES OF PATIENT ORGANISATIONS AS COMPARED TO AN EXISTING SAMPLE OF PEOPLE WITH RMDS

Abstract

BackgroundPatient organisations are a key resource of information and support for people with rheumatic and musculoskeletal diseases (RMDs). Patient representatives advocate for the development of appropriate resources and provide organisations with a rich range of perspectives, including health literacy strengths, needs and preferences. Health literacy is defined as“the personal knowledge and competencies that accumulate through daily activities, social interactions and across generations. Personal knowledge and competencies are mediated by the organisational structures and availability of resources that enable people to access, understand, appraise and use information and services in ways that promote and maintain good health and well-being for themselves and those around them”[1].ObjectivesTo identify health literacy strengths and weaknesses among patient representatives of RMD patient organisations, and compare with an existing dataset of people with RMDs attending outpatient rheumatology clinics [2].MethodsAll patient representatives attending the EULAR PARE Conference 2022 were invited to participate in an online survey before the conference. Health literacy was assessed using the Health Literacy Questionnaire (HLQ), which provides scores for nine distinct domains (higher scores being better; scores range 1-4 for domains 1-5, and 1-5 for domains 6-9). The survey also included socio-demographics and health-related characteristics. Hierarchical cluster analysis of patient representatives’ HLQ domain scores identified distinct health literacy profiles, based on minimal variance within and maximum variance between profiles. Results were compared with an existing cross-sectional sample of 895 patients with RMDs from different regions in the Netherlands. HLQ domain scores and patient characteristics were compared using chi-square and independent t-tests. Identified health literacy profiles were compared visually using heat maps.Results56 patient representatives completed the survey (76% response rate). Compared to previously surveyed patients, patient representatives were younger (mean ±SD age 49.3±13.0 vs. 61.1±13.9), more often female (79% vs. 49%, p<0.001), more highly educated (79% vs. 24.5% high education, 0% vs. 51% low education, p<0.001), more often employed (64% vs. 33%, p<0.001), and less often of migrant background (7% vs. 18%, p=0.044). Both groups were similar in terms of comorbidities (RDCI = 1.3 vs. 1.2), self-reported health (6.5 vs. 6.4), household (16% vs. 25% living alone) and mastery (20.3 vs. 20.0). Patient representatives scored higher on “3. Actively managing health” (3.1 vs. 2.9, p=0.001 & “5. Critical appraisal of information (3.2 vs. 2.7, p<0.001), but lower on “6. Actively engaging with providers” (3.6 vs. 4.0, p=0.001) & “7. Navigating the health system” (3.5 vs. 3.8, p=0.002). While similar patterns were seen in health literacy profiles, the profiles that represent most complex challenges in the patient survey (representing 16% of patients) were not found among patient representatives (see Figure 1).ConclusionPatient representatives of RMD patient organisations represent diverse profiles of health literacy strengths and weaknesses, but the most complex challenges in the original patient survey were not found. Differences may relate to how patients are selected and supported to become a representative, and how being a representative improves some aspects of health literacy. Patient organisations should take into account that their target population generally has more difficulty actively managing health and critically appraising information, and includes more people with diverse health literacy needs than their patient representatives may report.