A Taxonomy of Disease Experiences of Dutch Women with Sjögren’s Syndrome from the Perspective of the Patient

Abstract

The aim of this study was to explore, structure and summarize life experiences of women with Sjögren’s Syndrome (SS) from the perspective of patients. A concept mapping technique was used. Interviews in a previous study yielded 75 experiences of living with SS. A Dutch sample of 52 women, sorted these experiences by content and filled out questionnaires regarding the health-related quality of life and experiences of living with SS. A hierarchical cluster analysis was used to structure the experiences. Descriptive analyses were used to examine the agreement of patients with these experiences. In line with the expectation, cluster analyses showed a main clustering of primary symptoms, emotional processing, social interaction and self-management. Besides, clusters of experiences with ignorance and doctors were found. The results of the second part of the study gave more individual descriptions about the experiences. All primary symptoms are identifiable and there is little ignorance about the disease. The diagnosis is a relief for the patients, it takes the uncertainty away. Besides, management seems important in dealing with the disease. Participants show that acceptance, calmness and control over medical treatment contributes positively. Lastly, understanding of the disease and attention from family, partner and social network is essential for the patient.