Medizinische Universität Graz Austria/Österreich - Forschungsportal - Medical University of Graz
Gewählte Publikation:
SHR Neuro Krebs Kardio Lipid Stoffw Microb
Unger, J; Mattsson, M; Dragoi, RG; Avram, C; Bostroem, C; Buttgereit, F; Lackner, A; Witte, T; Raffeiner, B; Peichl, P; Durechova, M; Hermann, J; Stamm, TA; Dejaco, C.
The Experiences of Functioning and Health of Patients With Primary Sjogren's Syndrome: A Multicenter Qualitative European Study
FRONT MED-LAUSANNE. 2021; 8: 770422
Doi: 10.3389/fmed.2021.770422
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- Co-Autor*innen der Med Uni Graz
- Dejaco Christian
- Hermann Josef
- Lackner Angelika
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- Abstract:
- Objective: To identify a spectrum of perspectives on functioning and health of patients with primary Sjogren's syndrome (pSS) from the five European countries in order to reveal commonalities and insights in their experiences.Methods: A multicenter focus group study on the patients with pSS about their perspectives of functioning and health was performed. Focus groups were chaired by trained moderators based on an interview guide, audiotaped, and transcribed. After conducting a meaning condensation analysis of each focus group, we subsequently combined the extracted concepts from each country and mapped them to the International Classification of Functioning, Disability and Health (ICF).Results: Fifty-one patients with pSS participated in 12 focus groups. We identified a total of 82 concepts meaningful to people with pSS. Of these, 55 (67%) were mentioned by the patients with pSS in at least four of five countries and 36 (44%) emerged in all the five countries. Most concepts were assigned to the ICF components activities and participation (n = 25, 30%), followed by 22 concepts (27%) that were considered to be not definable or not covered by the ICF; 15 concepts (18%) linked to body structures and functions. Participants reported several limitations in the daily life due to a mismatch between the capabilities of the person, the demands of the environment and the requirements of the activities.Conclusion: Concepts that emerged in all the five non-English speaking countries may be used to guide the development and adaption of the patient-reported outcome measures and to enhance the provision of treatment options based on the aspects meaningful to patients with pSS in clinical routine.
- Find related publications in this database (Keywords)
- Sjogren's syndrome
- quality of life
- PROMs
- focus group technique
- psychological impact
- social impact
- physical impact
- ICF