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We aimed to assess the validity and reliability of a Patient Reported Experience Measures (PREMs) questionnaire which can be used in standard clinical practice to measure self-defined important experiences of inflammatory arthritis patients.The Patient Reported Experience Measures (PREMs) questionnaire was conceptualised based on frameworks used by the WHO Quality of Life tool, as well as the PRO measurement information system (PROMIS). Cognitive interviews were conducted with 94 inflammatory arthritis patients (diagnosed according to EULAR/ACR criteria 2010), with a range of severity and disease activity to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of physicians, nurses, health educators and occupational therapy (OTs) feedback, in addition to clinometric and psychometric methods. The latter included Rasch and internal consistency reliability analyses. The PREMs questionnaire was developed centered around 5 categories: 1. Journey to diagnosis, 2. Impact of the disease on the patients' everyday life, 3. knowledge about the disease, 4. the care in the hospital, and 5. patient education and aftercare (including what to do in case of exacerbation). After analysis for ordered response options, content analysis and semi structured group discussion to cover these 5 categories, 32 questions were identified as the final item set. The routine clinic was used as a setting for the questionnaire evaluation. 183 patients were asked to complete the PROMs as well as PREMs questionnaires whilst sitting in the waiting area before being examined by the treating physician. Reliability and comprehensibility was assessed using the Test-retest reliability (reproducibility).The tool was derived from RA patients, therefore establishing its face validity. The PREMs questionnaire showed a high degree of comprehensibility (9.3). It demonstrated a relatively high-standardised alpha (0.892). The questionnaire items correlated significantly (p0.01) with clinical parameters of disease activity, PROMs, self-helplessness and DAS-28 score supporting its construct validity. The domain of impact of arthritis correlated significantly (p0.01) with health related quality of life (HRQOL) score as well as disease activity and damage measures, establishing its criterion validity. Patient education and aftercare correlated significantly (p0.01) with adherence to therapy.The studied PREMs questionnaire had fair psychometric properties as it was valid, reliable and comprehensible. The patients were able to comprehend varying response options on a categorical scale, and could accurately respond to items using a 7-day recall period. It provides informative measure for the patients' experience with their disease, and in the meantime, facilitates incorporating the patients' feedback into the patients' management algorithm.

To assess the integration of PROMs and patient education, using the joint-fitness programme, and the effectiveness of this combined approach on disease activity and adherence to therapy.This was a double-blind randomised controlled study which included 147 arthritic patients monitored over 18 months. Every patient completed a PROMs questionnaire. By the 6th month of treatment, the patients were randomly allocated to an active group (74 patients) that was able to view former self-reported PROMs scores and discuss the implementation of the joint fitness programme as a tool for psycho-educational interventions. The control group (73 patients) continued their treatment and management based on viewing their recorded PROMs and clinical assessment. The patients were assessed at 3 monthly intervals for another 12 months. The primary outcome was the change in the patients' adherence to their medications, disease activity score (DAS-28) and PROMs domains.The integration of patient education and PROMs led to a significant greater reduction of disease activity parameters, DAS-28 score, as well as improvement of the patients' adherence to therapy (p0.01). The improvement of disease activity parameters was associated with the improvement in functional disability and quality of life scores. At 18-month-follow-up, both the self-management and cognitive behavioural therapy intervention demonstrated improvement for disease activity (effect size 1.4 and 1.2 respectively).The integration of patient education and PROMs succeeded in improving self-perceived health as well as disease activity. The patient education for patients with inflammatory arthritis is feasible in the standard clinical practice.

To assess validity, reliability and sensitivity to change of a new questionnaire for assessment of functional disability and quality of life in ankylosing spondylitis (AS) patients.Using Rasch analysis and 71 questions item pool, content analysis and semi structured group discussion, the combined AS questionnaire (CASQ) was developed including: 10-item scale to assess functional impairment (CASQ-FI), and 10 items to assess quality of life (CASQ-QoL). Construct validity was assessed by correlating the score of the questionnaire to parameters of disease activity namely, the BAS-FI, BAS-DAI, BAS-G, BAS-Metrology Index, and the occupational status. In addition, the CASQ was compared to both HAQS and ASQoL. Sensitivity to change of the developed CASQ was also assessed.The CASQ questionnaire for functional impairment (CASQ-FI: 10 items) and quality of life (CASQ-QoL: 10 items) showed acceptable validity as it correlated significantly with clinical parameters of disease activity: BAS-FI (CASQ-FI: r=0.85, CASQ-QoL: r=0.86), BAS-DAI (CASQ-FI: r=0.71, CASQ-QoL: r=0.87) and BAS-G (CASQ-FI: r=0.64, CASQ-QoL: r=0.79). Compared to HAQS and ASQoL, the CASQ-QoL was as well or better correlated with clinical and outcome measures. The CASQ was also reliable (Cronbach's alpha for CASQ-FI 0.958, and CASQ-QoL 0.966) and had no misfitting items. In addition, both CASQ questionnaires were sensitive to change (p0.01)The CASQ is a reliable and valid tool for assessment of functional impairment and quality of life in AS. The CASQ is well accepted by patients, sensitive to change, easy to administer and score. The CASQ-FI and CASQ-QoL questionnaires can either be used and scored separately to assess for functional disability as well as quality of life or in combination as tools to assess for both parameters.