PRO Measures Important for Shared Decision-Making Process in AS and PsA

Researchers collected data on patient-reported outcome measures in spondyloarthritis from patients with psoriatic arthritis and ankylosing spondylitis.

In patients with ankylosing spondylitis (AS) and psoriatic arthritis (PsA), the inclusion of patient-reported outcome measures (PROMs) in routine clinical care may facilitate a greater shared decision-making process between patients and their health care providers, according to study results published in Rheumatology and Therapy.

Various instruments may be used to assess PROMs, which provide perspectives and experiences of patients with the disease. The objective of the current study was to assess the PROMs used for spondyloarthritis and identify PROM content that is suitable for implementation in clinical practice.

Researchers conducted semi-structured group discussions with patients with PsA or AS to collect qualitative feedback on several general health and disease-specific PROMs commonly used in the management of these conditions.

The study cohort included 12 patients (10 women) with PsA and 12 patients (6 women) with AS, who were all asked to participate in a teleconference or an in-person meeting aimed at identifying PROM content that most resonated with their experiences.

Both patients with PsA and those with AS identified isolation, fatigue, depression, interpersonal relationships, and sexual intimacy as the concepts that best reflected their experiences. Study participants appreciated questions pertaining to these subjects, and several of them reported that they would like to discuss these topics with their health care providers in the future. Study participants also felt that the existing PROMs should incorporate several topics, including pain, physical function, ability to perform activity of daily living, and stiffness.

According to the participants, health care providers often did not understand completely the effect of fatigue on their decision to complete activities of daily living and their personal relationships.

A few qualitative differences were noted between patients with PsA and those with AS. Patients with PsA appreciated questions regarding shame and embarrassment and the effect of the disease on their daily living, whereas patients with AS felt that PROMs should include an assessment of their experiences with pelvic and chest pain.

The 4 PROMs that best represented the experience of patients with AS or PsA were the Psoriatic Arthritis Impact of Disease-9/12, Patient-Reported Outcomes Measurement Information System-29, the Health Assessment Questionnaire Disability Index, and Bath Ankylosing Spondylitis Disease Activity Index.

The study had several limitations, including the relatively small sample size, limited available data on the disease manifestations, potential bias due to inclusion of more health-engaged patients that agreed to participate in the study, and time constraints to discuss each PROM.

“Results of these qualitative assessments suggest that PROMs should be incorporated more frequently in outpatient settings to help improve the quality of decision-making conversations between patients and their health care providers,” the researchers concluded.

Disclosure: This clinical trial was supported by Janssen Scientific Affairs, LLC. Please see the original reference for a full list of authors’ disclosures.


Chakravarty SD, Abell J, Leone-Perkins M, Orbai A-M. A novel qualitative study assessing patient-reported outcome measures among people living with psoriatic arthritis or ankylosing spondylitis. Rheumatol Ther. Published online 22 February, 2021. doi:10.1007/s40744-021-00289-w