The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study
Objective: To identify a spectrum of perspectives on functioning and health of patients with primary Sjögren'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 abo...
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Frontiers Media S.A.
2021
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oai:doaj.org-article:87a3f0ab60d34443aad557a411002db72021-11-18T07:54:23ZThe Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study2296-858X10.3389/fmed.2021.770422https://doaj.org/article/87a3f0ab60d34443aad557a411002db72021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fmed.2021.770422/fullhttps://doaj.org/toc/2296-858XObjective: To identify a spectrum of perspectives on functioning and health of patients with primary Sjögren'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.Julia UngerJulia UngerMalin MattssonMalin MattssonRăzvan G. DrăgoiClaudiu AvramCarina BoströmFrank ButtgereitAngelika LacknerTorsten WitteBernd RaffeinerPeter PeichlMartina DurechovaJosef HermannTanja A. StammChristian DejacoChristian DejacoFrontiers Media S.A.articleSjögren's syndromequality of lifePROMsfocus group techniquepsychological impactsocial impactMedicine (General)R5-920ENFrontiers in Medicine, Vol 8 (2021) |
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DOAJ |
| collection |
DOAJ |
| language |
EN |
| topic |
Sjögren's syndrome quality of life PROMs focus group technique psychological impact social impact Medicine (General) R5-920 |
| spellingShingle |
Sjögren's syndrome quality of life PROMs focus group technique psychological impact social impact Medicine (General) R5-920 Julia Unger Julia Unger Malin Mattsson Malin Mattsson Răzvan G. Drăgoi Claudiu Avram Carina Boström Frank Buttgereit Angelika Lackner Torsten Witte Bernd Raffeiner Peter Peichl Martina Durechova Josef Hermann Tanja A. Stamm Christian Dejaco Christian Dejaco The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| description |
Objective: To identify a spectrum of perspectives on functioning and health of patients with primary Sjögren'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. |
| format |
article |
| author |
Julia Unger Julia Unger Malin Mattsson Malin Mattsson Răzvan G. Drăgoi Claudiu Avram Carina Boström Frank Buttgereit Angelika Lackner Torsten Witte Bernd Raffeiner Peter Peichl Martina Durechova Josef Hermann Tanja A. Stamm Christian Dejaco Christian Dejaco |
| author_facet |
Julia Unger Julia Unger Malin Mattsson Malin Mattsson Răzvan G. Drăgoi Claudiu Avram Carina Boström Frank Buttgereit Angelika Lackner Torsten Witte Bernd Raffeiner Peter Peichl Martina Durechova Josef Hermann Tanja A. Stamm Christian Dejaco Christian Dejaco |
| author_sort |
Julia Unger |
| title |
The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| title_short |
The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| title_full |
The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| title_fullStr |
The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| title_full_unstemmed |
The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study |
| title_sort |
experiences of functioning and health of patients with primary sjögren's syndrome: a multicenter qualitative european study |
| publisher |
Frontiers Media S.A. |
| publishDate |
2021 |
| url |
https://doaj.org/article/87a3f0ab60d34443aad557a411002db7 |
| work_keys_str_mv |
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