Young adult patients with inflammatory arthritis were found to highly value the importance of patient-reported outcome measures (PROMs); however, these patients noted that commonly used PROMs failed to sufficiently encompass the entire spectrum of IA, according to study results published in Rheumatic & Musculoskeletal Diseases.
Measuring PROMs is an important component of patient-centered care; these measures have been used more frequently in recent decades, especially in the field of chronic diseases. The objective of the current study was to determine the perspectives of young adult patients from various European countries on PROMs in IA.
The multinational, qualitative study included young patients aged 18 to 35 years with rheumatoid arthritis, juvenile idiopathic arthritis, Still disease, psoriatic arthritis, or spondyloarthritis from Austria, Croatia, Italy, and the Netherlands. Patients were invited to participate in focus groups at local centers, and a thematic analysis of qualitative data was completed.
The study sample included 53 patients (mean age, 28 years; 71.7% women) who participated in 12 focus groups. Findings suggested a general positive attitude toward PROMs and participants acknowledged their importance in clinical practice. A total of 48 lower level concepts from the perspective of young adult patients with IA were summarized into 6 higher level concepts describing potential issues for improvement.
From the perspective of young adult patients with IA, the available assessment tools had several limitations, including lack of transparency and clarity regarding the purpose of PROMs, the measures not being up to date, and that relevant issues (education, career goals, and intimate relations) were frequently not sufficiently addressed. In addition, the scoring on a rating scale differed from the current health situation, and some patients reported that for various reasons they tended to rate pain, fatigue, or disease activity differently from what they actually felt, that they would like to talk about their experience with IA, and preferred PROMs to be tailored to their individual goals and needs. Lastly, the use of technology for data acquisition was suggested by some patients.
“The results of our study will change the use of PROMs in young people with IA in clinical practice and research. In the future, young people with IA should be involved in the adaptation of existing PROMs and the development of new instruments to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease,” the study authors concluded.
Disclosure: This study was supported by EULAR. Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
Mosor E, Studenic P, Alunno A, et al. Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR Task Force. RMD Open. 2021;7(1):e001517. doi:10.1136/rmdopen-2020-001517