FRI0353 Development and validation of questionnaires to assess healthcare utilisation and access in cohorts of patients with primary sjoÖgren’s syndromeat the diagnosis and during the disease course
Authors: C. Seghieri, T. Grillo Ruggieri, C. Baldini, L. Quartuccio, R. Priori, E. Bartoloni, F. Carubbi, M. Orlandi, S. Gandolfo, S. De Vita, S. Bombardieri
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> The geographic variation in healthcare spending, utilisation and quality, across and within countries is well documented. Part of this geographic variation is linked to differences in population health and needs. However, some of the variation may be unwarranted and driven by factors including provider discretion, availability and distribution of resources, financing and reimbursement models. <h3>Objectives</h3> To develop and validate an instrument a) to assess the pSS patients’ experience and satisfaction along their clinical pathway including both primary care services and specialists, b) to collect comparable information in Europe to establish practice profiles in the diagnosis, management and treatment of patients with primary SjÖgren’s Syndrome (pSS). <h3>Methods</h3> The questionnaire consists of 32 items and collects patient-reported data on: type and intensity of treatments and services received (e.g. diagnostic testing, hospitalizations, specialist visits), costs, patients’ satisfaction with the care received and general information covering patients’ overall health, education, ethnicity and marital status. A narrative-based medicine section is also included in the questionnaire administered to newly diagnosed patients to explore their journey to pSS diagnosis. Additionally, a short questionnaire is administered to the specialists treating the pSS patients to collect data on the organisation of their clinical centres. <h3>Results</h3> The pilot version of the questionnaire was administered to 164 pSS patients (mean (SD) age: 60 (12.2) yrs) from 6 clinical centres. The majority of the respondents had a primary or secondary school (59%). Disease activity was significantly associated with frequency of rheumatologic visits and diagnostic tests (p&lt;0.001). Both the total number of specialists involved in the care other than the rheumatologist and the number of treatments received in the last 12 months before the interview varies significantly among patients and across centres (p&lt;0.001). Patients with lower education have attended on average less specialists than those with a high school or university degree (p&lt;0.001). Construct validity was supported by the questionnaire’s ability to discriminate between groups with different levels of activity of the disease and socio-demographic characteristics. <h3>Conclusions</h3> Preliminary results confirm that the questionnaire is a valid instrument to assess and compare patterns of care for pSS patients in terms of access and utilisation of treatments and services across and within providers. Patient-reported data linked with available information from clinical records will allow to measure quality of care more comprehensively and to identify best practices and opportunities for improvement, enhance care outcomes, and increase value for patients. Further analysis will be conducted in other clinical centres within the European Horizon2020 project “HarmonicSS” to verify the generalizability and additional psychometric properties of the instrument before collecting data across and within countries <h3>Disclosure of Interest</h3> None declared