Illness Experience and Quality of Life in Sjögren Syndrome Patients

Gonzalo Rojas-Alcayaga, Andrea Herrera, Iris Espinoza, Matías Rios-Erazo (), Jacqueline Aguilar, Loreto Leiva, Nailah Shakhtur, Pamela Wurmann and Rinie Geenen
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Gonzalo Rojas-Alcayaga: Behavioral Science Area, Institute for Research in Dental Science, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile
Andrea Herrera: Behavioral Science Area, Institute for Research in Dental Science, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile
Iris Espinoza: Department of Oral Medicine and Pathology, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile
Matías Rios-Erazo: Behavioral Science Area, Institute for Research in Dental Science, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile
Jacqueline Aguilar: Behavioral Science Area, Institute for Research in Dental Science, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile
Loreto Leiva: Department of Psychology, Faculty of Social Sciences, Universidad de Chile, Santiago 7800284, Chile
Nailah Shakhtur: National Association of Sjögren Patients of Chile, Santiago 8320214, Chile
Pamela Wurmann: Reumathology Section, Medicine Department, Clinical Hospital, Universidad de Chile, Santiago 8380456, Chile
Rinie Geenen: Department of Psychology, Utrecht University, 3584 CS Utrecht, The Netherlands

IJERPH, 2022, vol. 19, issue 17, 1-15

Abstract: Sjögren’s syndrome (SS) is a disease with autoimmune features that affects mainly women and compromises the health-related quality of Life (HRQoL); it is important to evaluate illness experience for a better understanding of the life situation of the patient. The aim of the study was to summarize the individual life experiences and determine the impact of HRQoL and oral health-related quality of life (OHRQoL) and their correlation with health self-assessment in women with SS. The life experiences evaluation employed a concept mapping design to structure qualitative content obtained from semi-structured interviews. Hierarchical cluster analysis was used to analyze the patient’s experiences. EQ-5D-5L and OHIP-14Sp were used. The correlation between appreciation of the general health status and OHIP-14 was evaluated. The experience classification by patients were analyzed and a dendrogram was obtained, identifying 10 clusters of disease experiences of SS, being limitations, pain and difficulties, coping and attitudes towards treatment the most common. Pain/discomfort in EQ-5D-5L and physical pain and psychological discomfort in OHIP-14 were the most affected dimensions in the patients. The results support the theoretical perspective that the experience of illness is relevant to describing the main difficulties of patients with SS and how it affects their quality of life.

Keywords: Sjögren’s syndrome; quality of life; women (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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