Background/Purpose: Previous research developed a set of 8 priority treatment outcomes generated by patients to complement the professionally developed ACR core set for RA. These outcomes were pain, activities of daily living (ADL), visible joint damage, mobility, life enjoyment, independence, fatigue, and valued activities.¹ This abstract reports face validity in existing instruments (Phase 1), and the construction of new Numerical Rating Scales (NRS) where validated measures did not exist (Phase 2).

Methods: Phase 1: Two consultation meetings with patient research partners (N=18) were held. Patient research partners discussed and voted on their preferences for scales identified in the literature for each of the 8 priorities, except VJD (no scales could be found).

Phase 2: Two focus groups with RA patients (N=8) were facilitated. Draft scales constructed from the Phase 1 discussions were used. Feedback on the stem question, time frame, anchors and layout was recorded and transcribed verbatim.

Results: Existing NRS for pain², ADL² and fatigue³ were voted as acceptable. However, patient research partners strongly recommended that severity of, importance of and ability to cope with each priority outcome be assessed, resulting in 24 questions (21 new). Visual joint damage created the most discussion, with concerns that the word ‘damage’ would be upsetting to newly diagnosed patients. PRP understood ‘mobility’ diversely, but a consensus was reached that it should focus on ‘getting around outside the home’. In relation to valued activities, patients stressed that the stem question should focus on current activities, not those valued pre-diagnosis: “It needs to say ‘currently’.  You know, if you’re asking about how a drug changes your life over four months, or six months or whatever it is, you know, it’s kind of what your current expectation, how that’s changed” (PE, p.30). Feedback on layout included making the questions in each domain visually separate using shaded boxes, underlining key words and putting the instructions in bullet points.

Conclusion: Existing instruments did not capture the patient perspective in 5 of the 8 priority outcomes. User involvement has been essential in developing the new patient-reported outcomes. An ongoing study will test the sensitivity of the 24 RAPP-PI NRS compared to the Disease Activity Score. 

¹Sanderson et al. AC&R 2010;62(5):647-656. ²Gossec et al. ARD 2011;70:935-942. ³Nicklin et al. AC&R 2010;62(11):1559-1568.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-development-of-the-rheumatoid-arthritis-patient-priorities-in-pharmacological-intervention-outcome-measures/