Date: Sunday, November 7, 2021
Session Type: Poster Session B
Session Time: 8:30AM-10:30AM
Background/Purpose: Psoriatic Arthritis (PsA) affects multiple attributes of patient health; to assess treatment effectiveness a compilation of Patient Reported Outcomes (PRO) have been utilized. While useful, most of these were originally created for other diseases and only later validated or adapted for use in PsA. More recent efforts have focused on development of PsA specific PRO tools, with inclusion of patient input and relevance for use in both clinical research and clinical care (1). Our research subjected a broad set of currently used PROs to patient assessment, giving clinicians insight into their usefulness in the clinic and informing ongoing efforts for optimization of PROs in PsA.
Methods: Four focus groups were conducted across three regionally-diverse areas in the United States from March 2016 to October 2016. Patients represented a range of disease history, symptoms, and severity. After trained facilitators encouraged open conversation about PsA, including symptoms, challenges and feelings about disease and treatment, patients were given time to review 13 currently utilized PROs and rate relevance of these instruments to reporting their disease experiences on a 3 point scale of Relevant, Somewhat Relevant, and Irrelevant. Verbal discussion followed on the merits and challenges of each rated PRO.
Results: PRO instruments ranged from overall global assessments to disease specific assessments (Table 1). The PROs received a variety of ratings, with Functional Assessment of Chronic Illness Therapy – Fatigue (FACIT-F) and Psoriatic Arthritis Impact of Disease (PsAID) judged as Very Relevant by the largest number of patients, followed by Health Assessment Questionnaire-Spondyloarthropathies (HAQ-S) and Pain VAS (Figure 1). Instruments receiving the most assessments of Not Really Relevant were Pt Global and PsA Quality of Life (PsAQOL). In the qualitative portion of the research, major patient critiques across PROs were the time frames listed on the questionnaires; some were too restrictive and disallowed reporting important recent disease activity. Preferences were for questions asked as ‘…since your last visit…’. Multiple participants also agreed that a visual tool allowing patients to circle specific joints to indicate pain would be useful.
Conclusion: Currently utilized PROs in PsA evaluating domains of fatigue, function, pain, and disease specific manifestations were all important regarding new therapeutic agents. However, some are more relevant than others to patients, most notably FACIT-F and PsAID, the latter being an important example of a patient-led and disease-specific development effort. Allowing reporting of items of concern without restrictive time periods is important to patients. These preferences and comments can be utilized to better understand the value of PROs in clinical settings to optimize patient-clinician communications.
1. Gossec L, de Wit M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis 2014;73: 1012–9.
To cite this abstract in AMA style:Mease P, Strand V, Furst D, Siegel E, Mcilraith M, Husni E, Hay M. Are Current Patient Reported Outcomes Instruments Optimized to Capture the Entire Patient Experience? [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 10). https://acrabstracts.org/abstract/are-current-patient-reported-outcomes-instruments-optimized-to-capture-the-entire-patient-experience/. Accessed December 3, 2021.
« Back to ACR Convergence 2021
ACR Meeting Abstracts - https://acrabstracts.org/abstract/are-current-patient-reported-outcomes-instruments-optimized-to-capture-the-entire-patient-experience/