Illness Experience and Quality of Life in Sjögren Syndrome Patients

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

Illness experiences in women with oral dryness as a result of Sjögrens’s syndrome: The patient point of view

Background Sjögren's syndrome and the associated dryness can have multiple consequences. The aim of the present qualitative study was to give an in-depth account of the life experiences of women with primary Sjögren's syndrome (pSS) and health-related behaviours, and to summarize these experiences in an integrated model. Methods Twelve women diagnosed with pSS who regularly attended the Hospital of the University of Chile participated in detailed interviews. The data were analysed using qualitative methods based on the principles of grounded theory. Results Selective coding identified three categories: illness experience, social interaction and psychological response. An integrated model was developed connecting these dynamic aspects and suggesting how they could lead to a life cycle crisis in cases of maladjustment. We found that problem-solving strategies, reconstruction of identity, acceptance and a social support may prevent this life cycle crisis. Discussion Xerostomia and other consequences of pSS can have a profound influence on daily life. However, the severity of the consequences depends on individual experiences with the illness, social influences and the psychological responses of the patient. Physicians, dentists and other healthcare professionals can help the patient by listening to their problems and exploring solutions based on a psychological approach

Illness Experiences of Chilean Women With Sjögren’s Syndrome: The Patient Perspective

Objective: Sjögren’s syndrome (SS) challenges everyday functioning and well-being. The aim of this study was to structure and summarize the life experiences of Chilean women with SS in an integrated model. Methods: Interviews from a previous study yielded 75 experiences of living with SS. A sample of 30 women with SS sorted these experiences by content and rated their level of agreement with each experience. A hierarchical cluster analysis was used to structure the experiences of the participants with SS in a comprehensive overview. A team-based consensus analysis was used to define the number of clusters. The level of agreement was examined with Wilcoxon’s signed rank test. Results: Ten clusters were identified and grouped into 6 main categories: symptoms (clusters: mucosal dryness and related symptoms), social environment, emotion management (clusters: fears and sadness), information (clusters: uncertainty and lack of knowledge), coping strategy (clusters: resilience and self-care), and health staff relationship. The clusters that describe the more common experiences among patients were resilience, self-care, uncertainty, lack of knowledge, health staff relationship, and mucosal dryness. Conclusion: This study provided an integrated and structured overview of disease experiences comprising both biomedical and psychosocial aspects as being of vital importance for the health of patients with SS. The overview can be used to get a quick impression of disease experiences that are important for an individual patient, in a therapeutic goal setting, and in the construction and evaluation of medical and nonmedical interventions or education

Illness Experiences of Chilean Women With Sjögren’s Syndrome: The Patient Perspective

Objective: Sjögren’s syndrome (SS) challenges everyday functioning and well-being. The aim of this study was to structure and summarize the life experiences of Chilean women with SS in an integrated model. Methods: Interviews from a previous study yielded 75 experiences of living with SS. A sample of 30 women with SS sorted these experiences by content and rated their level of agreement with each experience. A hierarchical cluster analysis was used to structure the experiences of the participants with SS in a comprehensive overview. A team-based consensus analysis was used to define the number of clusters. The level of agreement was examined with Wilcoxon’s signed rank test. Results: Ten clusters were identified and grouped into 6 main categories: symptoms (clusters: mucosal dryness and related symptoms), social environment, emotion management (clusters: fears and sadness), information (clusters: uncertainty and lack of knowledge), coping strategy (clusters: resilience and self-care), and health staff relationship. The clusters that describe the more common experiences among patients were resilience, self-care, uncertainty, lack of knowledge, health staff relationship, and mucosal dryness. Conclusion: This study provided an integrated and structured overview of disease experiences comprising both biomedical and psychosocial aspects as being of vital importance for the health of patients with SS. The overview can be used to get a quick impression of disease experiences that are important for an individual patient, in a therapeutic goal setting, and in the construction and evaluation of medical and nonmedical interventions or education

Illness Experience and Quality of Life in Sjögren Syndrome Patients

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