SAT0207 DEVELOPMENT OF QUESTIONNAIRES TO ASSESS HEALTHCARE UTILIZATION AND ACCESS IN PATIENTSWITH PRIMARY SJöGREN’S SYNDROME AT THE DIAGNOSIS AND DURING THE DISEASE COURSE
Authors: Chiara Seghieri, Chiara Baldini, Themis Exarchos, Luca Quartuccio, Elena Bartoloni Bocci, Roberta Priori, Francesco Carubbi, Francesco Ferro, Saviana Gandolfo, Stefano Bombardieri, Salvatore De Vita, Athanasios Tzioufas
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background:</h3> The geographic variation in healthcare spending, utilization and quality, across and within countries is well documented. <h3>Objectives:</h3> In this study, we develop and validate a tool 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> Two questionnaires, one to newly diagnosed patients and one for patients at their follow-up visits, have been developed and validated through a pilot survey. The questionnaires aim to assess the pSS patients' experience and satisfaction with the primary care and specialist services received. The questionnaires consist of 30 items and collect patient-reported data on: type and intensity of treatments and services received, costs, patients' satisfaction, patients' overall health, and socio-demographic characteristics. A narrative-based medicine section is also included to explore patients' journey to pSS diagnosis. The questionnaires are administered to a sample of pSS patients attending &gt;20 clinical centers within the European Horizon2020 project "HarmonicSS". Additionally, a short questionnaire is administered to the specialists of the clinical centers to collect data on their organization. <h3>Results:</h3> Preliminary results of pilot survey based on questionnaires administered to 164 pSS patients (157 F: 7 M, mean (SD) age = 60 (12.2) years) from 5 clinical centers have been analyzed. The majority of the respondents had a primary or secondary school (59%). 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 among patients and across centers (p&lt;0.001). Although, as expected, the most frequently involved specialists were the ophthalmologist (90%) followed by the gynecologist and the dentist. Additionally, patients with lower education have attended on average less specialists than those with a high school or university degree (p&lt;0.001). Findings from the survey to clinicians also show significant geographic variations in the organization of the care to pSS in the participating centres and in the level of integration among different professionals and care settings. On average, 4 professionals (i.e. clinicians and nurses) per centre are involved in care of pSS patients although with significant differences among centre (min=1, max=10) also in the mix of the staff. In 80% of the centres clinicians use written documentation to exchange patients' information, followed by periodic meetings with colleagues (56%) and phone calls with the family doctor (37%). In 54% of the centres the newly diagnosed patients are provided with information pamphlet and patients health education is performed in 35% of the center through periodic individual meetings. <h3>Conclusion:</h3> Preliminary results confirm that the questionnaire is a valid tool to assess and compare patterns of care for pSS patients in terms of access and utilization of treatments and services across and within providers. Once available the questionnaires from all the centres, patient-reported data linked with information from clinical records will allow to measure the patients journey more comprehensively along the care pathway and to identify best practices in terms of the level of perceived quality and the way the care is delivered and, moreover, opportunities for increasing value for patients. <h3>Disclosure of Interests:</h3> Chiara Seghieri: None declared, Chiara Baldini: None declared, Themis Exarchos: None declared, Luca Quartuccio: None declared, Elena Bartoloni Bocci: None declared, Roberta Priori: None declared, Francesco Carubbi: None declared, Francesco Ferro: None declared, Saviana Gandolfo: None declared, Stefano Bombardieri: None declared, Salvatore De Vita Grant/research support from: Roche, Pfizer, Abbvie, Novartis, BMS, MSD, Celgene, Janssen, Consultant for: Roche, Athanasios Tzioufas Grant/research support from: ABBVIE, PFIZER, AMGEN, NOVARTIS, GSK