Background The chronic autoimmune disease Sjögren’s syndrome is characterized by infiltration of the exocrine glands. The resulting dryness of eyes, mouth, and other parts of the body may have serious consequences for daily life functioning and well-being. Although dryness is the key feature of Sjögren’s syndrome, its consequences of dryness for daily life have not been systematically studied.
Objectives Aim of this study was to identify a comprehensive overview of the consequences of dryness as perceived by patients with Sjögren’s syndrome.
Methods Interviews were held with ten patients to yield statements about the consequences of dryness of patients with Sjögren’s syndrome. Thirty patients individually sorted the resulting 70 statements according to similarity. Hierarchical cluster analysis was used to structure the consequences of dryness.
Results The hierarchical structure of dryness showed a higher-order distinction between statements reflecting ‘Generic’ and ‘Disease specific’ consequences (Figure). The lowest level consisted of 9 clusters. The “Quality of life” cluster included general consequences for quality of life that are also observed in other diseases. The cluster “Disease-specific” was subdivided into 1) consequences reflecting primary symptoms in the “Eyes” and “Mouth”, 2) burden of the disease such as “Participation” in social activities, “Somatic” problems involving the whole body, and problems with “Intimacy”, and 3) miscellaneous consequences such as “Sensitivity”, “Dry hair”, and use of “Aids” to deal with consequences of dryness.
Conclusions This study is the first to identify and structure consequences of dryness from the perspective of patients with Sjögren’s syndrome. The overview can be used as an assessment instrument to get a quick impression of consequences of dryness that are important for an individual patient. Moreover, the overview can be applied in therapeutic goal setting, in the development of a questionnaire, in the construction of interventions aimed to relieve the burden of dryness, and in the evaluation of medical and non-medical interventions or education.
Acknowledgements Funded by: National Association Sjögren Patients, Dutch Arthritis Association.
Disclosure of Interest: None Declared