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BACKGROUND: Psoriatic arthritis (PsA) is a variable and complex inflammatory condition. Symptoms can compromise physical function, reduce quality of life, and accrue significant health costs. Commonly used patient-reported outcomes largely reflect the professionals' perspective, however it is not known whether they capture what is important to patients.
OBJECTIVE: The aim of our study was to identify treatment outcomes important to patients with PsA.
METHODS: Eight focus groups that were audio recorded, transcribed, anonymised and analysed using inductive thematic analysis were conducted at five hospital sites. The full data set was analysed by the lead researcher, and subsets analysed by three team members (including patient partners).
RESULTS: Overall, 41 patients sampled for a range of phenotypes and domains of disease activity participated in the study: 20 males; mean age 58 years (range 28-75, standard deviation [SD] 11.4); mean disease duration 9 years (range 0.5-39, SD 8.3); and mean Health Assessment Questionnaire score of 1 (range 0.0-2.5, SD 0.7). Over 60 outcomes were identified and grouped into four themes: (i) symptom alleviation (e.g. pain, fatigue, itchy skin, swelling, and reducing variability); (ii) reduction of disease impact (e.g. tiredness and pain, mobility and dexterity, deteriorating physical fitness, negative emotional responses, and strained relationships and social interactions); (iii) improved prognosis (e.g. slowing down disease progression, maintaining independence, and enhancing quality of life); and (iv) minimisation of treatment harm and burden (e.g. nausea, long-term effects, and administration and monitoring of treatments).
CONCLUSIONS: Outcomes from treatments that are important to patients, which relate to impacts from PsA and its treatment that range beyond those outcomes commonly measured, were identified. These patient perspectives need to be considered when evaluating treatments.
- Journal Article