Patient experiences and perspectives of DMARD monitoring in Australians with long-disease-duration rheumatoid arthritis and psoriatic arthritis

Regular laboratory testing is recommended for monitoring disease activity and adverse effects in people taking conventional synthetic disease-modifying antirheumatic drugs (csDMARDs), yet the perspectives and experiences of patients have not been examined and may inform practice. As such, we aimed to determine the experiences and perceptions of laboratory monitoring in Australian adults using csDMARDs for rheumatoid arthritis (RA) or psoriatic arthritis (PsA). Participants in the Australian Rheumatology Association Database who had RA or PsA were sent an online questionnaire capturing their demographics, frequency of advised and actual blood tests, barriers, benefits and whether they felt they had been given an adequate rationale for testing or felt they needed more information. Data were reported using descriptive statistics. The survey was distributed to 904 ARAD participants with RA and/or PsA with 679 responses (75.1%). A total of 451 people (348 RA, 103 PsA) fulfilled inclusion criteria. Most respondents were female (72.3%) with a mean age of 63.2 ± 10.7 years. The mean disease duration was 25.0 ± 11.7 years, and most respondents (82.5%) were taking methotrexate. Respondents reported being asked to have blood tests most frequently every 12 weeks (30.1%), followed by 4 (14.6%), 26 weeks (14.4%) and 8 (13.0%) weeks. 70.5% reported that they had their blood tests either early or on time. Most respondents (87.4%) reported that they felt the rationale for blood tests had been properly explained to them, with 19.5% reporting they would like more information. Overall, few reported perceived risks and costs, while almost all reported perceived benefits. Australian adults with RA and PsA taking csDMARDs are typically adherent to the schedule of laboratory monitoring requested by their treating rheumatologists. For most respondents, they reported perceived benefits with few reporting risks or costs. These self-reported findings from a long-disease-duration cohort should be used to inform standardised national guidelines for laboratory monitoring of csDMARDs. Further research into the perceived gaps in patient understanding of the need for laboratory testing may further enhance adherence.