Acceptability and Content Validity of Patient‐Reported Outcome Measures Considered From the Perspective of Patients With Rheumatoid Arthritis

Abstract

Objective. To consider the acceptability and content validity of patient-reported outcome measures commonly used in rheumatoid arthritis by describing patients' perceptions of patient-reported outcome measures and comparing patients' responses on patient-reported outcome measures with their verbal accounts of disease impacts. Methods. We used a sequential mixed methods approach, combining analysis of interviews and data from patientreported outcome measures (from the Health Assessment Questionnaire, the Functional Assessment of Chronic Illness Therapy-Fatigue subscale, the EuroQol 5-domain instrument, the Short Form 36 health survey, and a visual analog scale [VAS] for pain, fatigue, sleep, and patient global assessment of disease activity). Qualitative analysis of patients' perceptions of patient-reported outcome measures informed a subsequent comparison between data from patient-reported outcome measures and verbal accounts of pain, fatigue, sleep, and functional limitations to assess the effectiveness of patient-reported outcome measures in communicating disease impact. Results. The study included 18 patients. Although a few patients offered positive comments about patientreported outcome measures, most doubted that patient-reported outcome measures could accurately convey their experience of symptoms and functional limitations. Patients discussed the ease of responding to questions, capturing and conveying symptoms, and concerns about the underreporting of symptoms and interpretation of responses. Compared with verbal accounts, patient-reported outcome measures often did not convey the personal significance of limitations; however, patient-reported outcome measures captured limitations that patients omitted or described with insufficient detail during interviews. Although verbal accounts of pain could be categorized into 3 levels of severity (pain without interference in activities, pain is not the worst ever experienced but interferes with activities, and pain is omnipresent), the pain VAS was more effective at conveying finer gradations in pain severity. Conclusion. Although patients may feel that patient-reported outcome measures have certain shortcomings, patient-reported outcome measures also have advantages relative to verbal discussion for communicating symptoms and disease impact.

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

“…Such PROM feedback has potential to impact “readiness” for surgery [ 37 ] although the effect on THA/TKA timeliness would need to be examined [ 38 ]. Expanded monitoring—particularly beyond clinical encounters—may also address our participants’ concerns related to PROM scores as limited in capturing temporal dimensions of pain and function [ 39 ]. Scores that are perceived to accurately reflect health status have been described as foundational for patient acceptability of PROMs for clinical care [ 40 ], and repeat PROM measurement may be needed for patients to feel that their health status is adequately represented.…”

Predictive model to identify multiple failure to biological therapy in patients with rheumatoid arthritis

“…Nevertheless, patient-reported results could encourage physicians to focus on the impact of RA on patients, contributing to shared decision-making between patients and rheumatologists, and ultimately leading to a more patient-centered approach and better patient care overall. 26 – 30 …”

“…Nevertheless, patient-reported results could encourage physicians to focus on the impact of RA on patients, contributing to shared decision-making between patients and rheumatologists, and ultimately leading to a more patient-centered approach and better patient care overall. [26][27][28][29][30] Finally, in recent years, machine learning techniques are increasingly used in medical specialties to classify and identify patients and to predict possible outcomes that can ultimately facilitate making therapeutic decisions and better patient management. An example of these techniques are CART models (as the one we developed) which offer the possibility of using continuous or discrete variables, selecting these variables automatically according to their importance and information contribution.…”

Quick Systemic Lupus Activity Questionnaire (Q-SLAQ): a simplified version of SLAQ for patient-reported disease activity

“… 24 Furthermore, collecting patients’ perspectives of symptoms facilitates interaction, reflection and ability to communicate symptoms and how they impact everyday life for patients. 28 In the future, there is also a possibility to combine both perspectives with laboratory evaluations, where for example, measures of renal engagement are important, since they are not possible to capture by PROMs.…”