Background Psoriatic arthritis (PsA) is a variable and complex inflammatory arthritis. Symptoms can arise from psoriasis, enthesitis, dactylitis, and arthritis, which can compromise physical function, cause disability, and accrue significant health costs. The PROMPT research programme includes a randomised controlled trial (RCT) to investigate the benefit of earlier diagnosis of PsA on long term outcomes. Before the RCT can begin, it is important to include patient reported outcomes (PROMs) that are meaningful to patients. The measures currently used in PsA trials cover some of these domains and occasionally include a combined instrument such as the Composite Psoriatic Disease Activity Index questionnaire (CPDAI). However, they have been developed largely by professionals, consequently it is not known whether they capture what is most important to patients.
Objectives To identify the disease activity and impact outcomes that are important to patients with PsA.
Methods Eight focus groups at 5 hospital sites. Focus groups were audio-recorded, transcribed, anonymised, and analysed using Inductive Thematic Analysis. The full data set was analysed by the lead researcher, and a subset by 3 other team members (including patient partners).
Results Forty-one patients sampled for a range of phenotypes and domains of disease activity took part: men=20; mean age=58 years (range 28–75; SD 11.4); mean disease duration=9 years (range 0.5–39; SD 8.3); mean HAQ=1 (range 0.0–2.5; SD 0.7). Over 60 outcomes were identified and grouped into 5 main categories:
1. Symptoms: including pain (e.g. back, arms, hips); swelling (e.g. sausage digits; puffy hands); stiffness (e.g. feet, hands); fatigue (e.g. physically tired, mentally foggy); skin (e.g. red, itchy, flaky), and poor sleep.
2. Personal impact: including physical (e.g. loss of fitness, restricted mobility); emotional (e.g. low mood, anxiety, anger); and social (e.g. embarrassment; isolation; loss of work).
3. Negative outcomes from treatment: including experiences (e.g. side effects, nausea); fears (e.g. concerns about toxicity); and practical challenges (e.g. mode of administration; requirement of regular blood tests).
4. Effective outcomes of treatment: including alleviation of symptoms (e.g. pain, stiffness); better skin; life-changing/miraculous drugs; and able to lead a normal life.
5. Expectations of treatment: including able to do more; improve quality of life/wellbeing; halt long term joint damage and symptoms of PsA; maintain independence; gain greater disease control (e.g. fewer flares); and understand reasons for prescribed treatment.
Conclusions Qualitative data captured varied outcomes important to patients, from specific physical symptoms to the psychological, social and emotional impact on wellbeing and daily life. As it is not feasible or acceptable to include measures for all the outcomes generated, patients will now prioritise them in nominal groups. These priorities will be compared to the existing core set and the CPDAI. If patients identify important outcomes not currently measured, validated PROMs to capture these will be identified. This will lead to a set of measures capturing all relevant domains of PsA from the patient perspective.
Acknowledgement This research is part of the PROMPT study (NIHR grant: RP-PG-1212–20007)
Disclosure of Interest None declared