Diagnosis and initial management in psoriatic arthritis: a qualitative study with patients.

OBJECTIVES: PsA is an inflammatory condition that can cause pain, fatigue, swelling and joint stiffness. The consequences include impaired physical function, a high psychosocial burden, reduced quality of life and work disability. The presenting symptoms can be non-specific and varied, leading to delays in diagnosis or referral to specialist teams. The aim of this study was to explore patients' experiences of being diagnosed and the initial management of PsA. METHODS: The study used a qualitative design, with data collected in one-to-one, face-to-face semi-structured interviews. RESULTS: Fifteen newly diagnosed patients (<24 months) from three hospital sites in the southwest of England participated. Interviews were transcribed, anonymized and analysed using inductive thematic analysis. The following two main themes with sub-themes represent the data: symptom onset to specialist care: 'it was the blind leading the blind' (making sense of symptoms; mis-diagnosis and missed opportunities; and fast and easy access to expertise); and diagnosis as a turning point: 'having somebody say you've got something wrong with you, I was euphoric' (validation and reassurance; weighing up treatment options; taking on self-management; and acknowledging loss and change). CONCLUSION: Participants were already dealing with functional limitations and were highly distressed and anxious by the time they received their diagnosis. Physical and mental outcomes could be improved by the implementation of existing psoriasis management guidelines and strategies for earlier referral from primary care to rheumatology and by the development of guidelines on educational, self-management and psychological support provision soon after diagnosis.

Correction to: Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study.

The Open Access license, which previously read.

Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study.

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.

A Multicenter Nominal Group Study to Rank Outcomes Important to Patients, and Their Representation in Existing Composite Outcome Measures for Psoriatic Arthritis.

OBJECTIVE: To rank outcomes identified as important to patients with psoriatic arthritis (PsA) and examine their representation in existing composite measures. METHODS: Seven nominal group technique (NGT) meetings took place at 4 hospital sites. Two sorting rounds were conducted to generate a shortlist of outcomes followed by a group discussion and final ranking. In the final ranking round, patients were given 15 points each and asked to rank their top 5 outcomes from the shortlist. The totals were summed across the 7 NGT groups and were presented as a percentage of the maximum possible priority score. RESULTS: Thirty-one patients took part: 16 men and 15 women; the mean age was 54 years (range 24-77; SD 12.2), the mean disease duration was 10.3 years (range 1-40; SD 9.2), and mean Health Assessment Questionnaire was 1.15 (range 0-2.63; SD 0.7). The highest-ranked outcomes that patients wished to see from treatment were pain with 93 points (20.0%), fatigue 62 (13.3%), physical fitness 33 (7.1%), halting/slowing damage 32 (6.9%), and quality of life/well-being 29 (6.2%). Reviewing existing composite measures for PsA demonstrated that no single measure adequately identifies all these outcomes. CONCLUSION: Pain and fatigue were ranked as the outcomes most important to patients receiving treatment for PsA and are not well represented within existing composite measures. Future work will focus on validating composite measures modified to identify outcomes important to patients.