Living with dry mouth – Sjögren’s patients’ perspectives

Abstract

Aim The aim of this qualitative study was to provide clinicians with insight into how dry mouth can impact on the daily lives of Sjögren’s Syndrome (SS) patients. SS is an autoimmune exocrinopathy characterised by lymphocytic infiltration of exocrine glands in multiple sites, with dry mouth as a primary presenting symptom. Although quantitative studies have shown the negative impact of both dry mouth and SS on patients’ quality of life, no qualitative diary and interview study has been undertaken to examine the specific impact of dry mouth on SS sufferers.

Methods The revised international classification criteria (AECG) were used to identify participants from patients seen in the oral medicine clinic. After pilot study work to test the approach, the 10 main study participants were recruited. Diary entries and semi-structured interviews were used to explore how dry mouth affects the lives of SS sufferers. Owing to the exploratory nature of the research, thematic content analysis was applied, allowing the themes to arise naturalistically from the data without bias or elicitation. Results The main themes included: (1) the journey to diagnosis; (2) disease impact spectrum (of dry mouth amid other symptoms); (3) interactions with healthcare professionals (HCPs); and (4) the positive SS (and dry mouth) coping process. Conclusion The findings revealed patients’ perspectives on diagnosis, coping with dry mouth and SS, and interaction with HCPs. Dry mouth is not a trivial symptom for SS sufferers; it has considerable impact on their day-to-day lives. HCPs need this understanding in order to be part of the Sjögren’s journey.