Implementation of a novel patient reported experience measure (PREM) in rheumatology: a cross-sectional online survey of Australian rheumatology outpatients

To determine rheumatology patient care experience using the novel Commissioning for Quality in Rheumatoid Arthritis-PREM-Australian version (CQRA-PREM-AU). Patients attending Central Adelaide Local Health Network rheumatology outpatient clinics were invited to complete a cross-sectional web-based survey, comprising CQRA-PREM-AU (22 items, 8 domains, scored 1-5), demographics, Patient Global Assessment (PGA) and Patient Reported Disease Activity (PRDA) Visual Analogue Scales (VAS) (scored 0-100), Single Item Literacy Screener (SILS). Analysed were multivariable linear regression analysis of CQRA-PREM-AU overall score with patient-related covariates (diagnosis, age, sex, SILS, PGA, PRDA), and univariate regression analysis with clinic-related covariates (site, nurse contact, type/number of consultations). Response rate was 1408/4591(31%). 214 incomplete records were excluded; 1194 records were analysed. Respondent characteristics: 68% female, median age 64 years (IQR 54, 73), 29% rural, 7% non-English language at home. PGA median score 50 (IQR 27, 63) and PRDA median score 50 (IQR 26, 69). CQRA-PREM-AU Domain 1 (regarding patient Needs and Preferences) had the best overall mean score (4.1, SD 0.86). Scored poorly were Domain 3 (Information about care, 3.5, SD 0.89), Domain 4 (Daily living, 3.5, SD 1.06) and Domain 5 (Emotional care, 3.6, SD 1.04). Worse PGA, and diagnoses of systemic lupus erythematosus, "other", or "unknown" were all associated with significantly lower CQRA-PREM-AU score (p < 0.01). Older age, and rheumatology nurse contact were associated with better experience score (p < 0.01). Use of CQRA-PREM-AU highlights the association between contact with a rheumatology nurse and better care experience, and identifies other targets for improving healthcare delivery.