RESUMEN
INTRODUCTION: Primary Sjögren's is a multi-system autoimmune disease affecting patients' physical, mental, and emotional wellbeing. The epidemiology of Sjögren's is not well understood, and up-to-date epidemiological evidence is needed to improve knowledge and awareness of Sjögren's among patients and healthcare professionals, and to ascertain the global burden of disease. The objective of this research was to conduct a de novo systematic literature review (SLR) to identify and synthesise evidence on global epidemiology of primary Sjögren's. METHODS: This SLR was conducted in May 2021 by searching MEDLINE and Embase databases, relevant conference proceedings, websites of registries, and health technology assessment agencies and databases. Publications were systematically screened for English language articles reporting on the incidence, prevalence, age at symptom onset, and age at diagnosis for people with primary Sjögren's. RESULTS: Of 3510 records identified, 68 publications were included, representing 62 unique studies. Studies reported on age at symptom onset (16/62; 25.8%) and age at diagnosis (43/62; 69.4%) more frequently than incidence (7/62; 11.3%) and prevalence (9/62; 14.5%). Primary Sjögren's was found to have the highest incidence and prevalence in females and in older age groups (incidence: ≥65 years; prevalence: ≥75 years). Average age at onset and diagnosis of primary Sjögren's ranged between 34-57 years and 40-67 years, respectively. CONCLUSIONS: This SLR identified a paucity of incidence and prevalence data for primary Sjögren's, highlighting a need for further epidemiological studies. The global Sjögren's community must work together to follow the defined classification criteria of primary Sjögren's and reporting guidelines for incidence and prevalence data to allow for meaningful epidemiological comparisons across studies, settings, and countries.
RESUMEN
INTRODUCTION: The symptoms associated with Sjögren's disease (Sjögren's) are well-documented from the physician's perspective. However, from the patient's perspective, there is limited information on symptoms and their impact on health-related quality of life (HRQoL). This study aimed to provide an expanded understanding of patients' experience of Sjögren's and how symptoms impact HRQoL using a novel multi-method social media listening (SML) approach. METHODS: A total of 26,950 social media posts with relevant content on Sjögren's posted by social media users from the USA, Canada, Australia, UK, France, Germany, Italy, Spain and China were analysed using an artificial intelligence natural language processing tool to explore patient conversations. Symptoms by level of impact on patients were characterised based on 'commonness' and 'bothersomeness'. Applied concept association analysis was used to assess relationships between symptom domains and impact domains. A qualitative framework was applied to explore words and phrases patients use to describe symptoms and their impacts. RESULTS: Five of the identified symptom domains were very impactful: Pain; Dry Mouth and Throat; Fatigue, Energy and Sleep; Emotional Balance; and Dry Eye. The symptom domains Pain and Dry Mouth and Throat were the most common, while those of Emotional Balance and Fatigue, Energy and Sleep were the most bothersome. Symptom domains most closely associated with four HRQoL impact domains were Fatigue, Energy and Sleep, Dry Mouth and Throat and Dry Eye with Daily Functioning; Fatigue, Energy and Sleep with Financial Health; Emotional Balance with Psychological Wellbeing and Gynaecological Issues with Social Wellbeing. CONCLUSION: The results of this SML study show that Sjögren's affects diverse aspects of patients' lives, with symptoms extending beyond dry eyes and mouth and impacting daily living and functioning. Because symptoms may affect patients differently, these results highlight the importance of measuring impact on HRQoL to assess patient outcomes and treatment options in routine clinical practice and clinical trials.
