Background/Purpose: The geographic variation in healthcare service utilization 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 other than health needs, such as provider discretion, the availability and distribution of resources, financing and reimbursement models (Wennberg 2011). In this study, we identified the need for instuments to collect comparable data in Europe to establish practice profiles in the treatment and management of patients with Primary Sjögren’s Syndrome (pSS).

Methods: We describe the development and preliminary validation of a questionnaire to pSS to collect information on access to and intensity of treatments and services (e.g. diagnostic testing, hospitalizations, specialist visits), patients’ satisfaction with the care received and socio-demographic data (e.g. age, sex, education level). A short questionnaire is also administered to specialists treating the selected pSS to collect data on the organization of the clinical centers and involvement and relations with other healthcare professionals besides clinical information of the selected patients.

Results: The pilot version of the questionnaire was administered to 50 pSS in the clinical centre of Pisa (Italy) and counted 22 closed-ended questions. Three questionnaires out of 50 were returned incomplete. Mean (SD) age was 60 (12.2) years and 96% of the sample was female. The majority of the respondents had a primary or secondary school (59%). 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. Disease activity was significantly associated with frequency of rheumatologic visits and diagnostic tests (p<0.001). The total number of specialists involved in the care other than the rheumatologist varies significantly among patients. As expected, the most frequently involved were the ophthalmologist (90%) and the dentist (58%). Additionally, patients with lower education have attended on average less specialists than those with a high school or university degree (p<0.001).

Conclusion: Preliminary results confirm that the questionnaire is a valid instrument to assess patterns of care for pSS in terms of access and utilization and in relation to clinical and socio-demographic characterictics of patients. Further analysis will be conducted in other clinical centers within the European Horizon 2020 project “HarmonicSS” to verify the generalizability and additional psychometric properties of the instrument.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-validation-of-a-questionnaire-to-assess-healthcare-utilization-and-access-in-cohorts-of-patients-with-primary-sjo%cc%88grens-syndrome/