From a total cleaned and tagged sample of 26,950 posts on Sjögren’s from patients, friends, family, healthcare professionals and members of the public across the studied countries, 38% came from the Anglo markets of study, 35% from China and 27% from the EU markets. Of these 26,950 total posts, 6512 patient posts were identified, of which 23% could be linked to a social media account with a known gender identity (analysis only available for posts from Twitter accounts). Of the latter, 85% were from individuals identifying as female. Of the 6512 patient posts, 4231 mentioned a specific symptom or a HRQoL impact of Sjögren’s.

The analysis identified 26 distinct individual symptom concepts, which were organised into 16 symptom domains: five symptom domains comprising multiple distinct symptoms and 11 domains representing one individual symptom only.

The identified symptom concepts and symptom domains represent patients’ expressions of their Sjögren’s experiences. Several symptom concepts and domains have labels that include the names of separate medical conditions, such as ‘fibromyalgia’ and ‘postural tachycardia syndrome (POTs)’, because patients referred to their symptom experiences in these terms. When these terms appear in symptom labels, they are found within speech marks to designate that this refers to Sjögren’s patient’s language and not to a confirmed medical diagnosis.

The symptom domain commonness ranged significantly, from 51% for Pain to only 2% for ‘POTs’. The five symptom domains with the highest commonness were Pain (commonness of 51%); Dry Mouth and Throat (41%); Fatigue, Energy and Sleep (40%); Emotional Balance (33%) and Dry Eye (32%) (Fig. 2; ESM Fig. S2).

The top five symptom domains which are most the common (commonness) and most bothersome (bothersomeness), but in a different order

These five symptom domains were also the most bothersome, but in a different rank order. Emotional Balance was highest in bothersomeness, with a score of 9.0, followed by Fatigue, Energy and Sleep (8.5); Pain (7.8); Dry Eye (7.4) and Dry Mouth and Throat (7.3) (Fig. 2; ESM Fig. S3).

Differences in commonness were found by country cluster. Most notably, Sjögren’s impact on pregnancy and birth was mentioned more commonly in patient posts from China (50%) than in general across all posts (16%). Similarly, the Dry Mouth and Throat symptom domain was the most common (53%) in patient posts from China, but only the second most common (41%) in general. This study did not calculate bothersomeness scores for symptoms at a country cluster level.

Patients’ experience of Sjögren’s varied across three timescales. Over the course of a day, patients described peaks in the number and bothersomeness of their symptoms, which occurred in the afternoon and especially during the night. Over days to weeks, they described experiencing ‘flares’ as intermittent and unpredictable events wherein symptoms severely disrupted their ability to move and think (see Table 1). Finally, patients mentioned an evolution of symptoms over longer time periods (weeks to years), from early indicators, such as dry eye and gynaecological issues, to an expanded, more systemic symptom list that included symptom domains such as stiff and swollen joints, and pain.

When the measures of commonness and bothersomeness were brought together into a Symptom Impact Framework, five symptom domains were defined as ‘very impactful’. These, ranked according to bothersomeness, were: Emotional Balance; Fatigue, Energy and Sleep; Pain; Dry Eye and Dry Mouth and Throat. Six symptom domains were defined as ‘impactful’. The two most bothersome of these symptom domains, with scores > 6.5, were nausea and digestive issues (18% commonness, bothersomeness score 6.7) and ‘Neuropathy’, Tingling and Numbness (20%, 6.6). The other symptom domains defined as ‘impactful’ were Feeling Thirsty and Dehydrated; Stiff and Swollen Joints; and Nose and Sinus and Gynaecological Issues. Five symptom domains were defined as ‘less impactful’: ‘Raynauds’; Impact on Pregnancy and Birth; Skin Issues; Lung Problems and ‘POTs’ (Fig. 3).

Symptom impact framework captures the mention of commonness versus bothersomeness

Sjögren’s symptoms in the ‘very impactful’ symptom domains of Dry Eye and Dry Mouth and Throat are detailed in previous literature. To broaden the understanding of Sjögren’s patient experience, this report focuses on findings on the other ‘very impactful’ symptom domains: Emotional Balance; Fatigue, Energy and Sleep; and Pain.

Three symptom concepts within Emotional Balance had varying degrees of commonness: Anxiety (15%); Emotional Struggle (15%); and ‘Depression’ (13%). Emotional Struggle was a distinct cluster of linguistic ideas describing the emotional experiences of patients as they try to navigate life while managing a chronic, disruptive and unpredictable illness.

The symptom domain of Fatigue, Energy and Sleep included the individual symptoms of Fatigue and Exhaustion (24% commonness); Cognitive Fatigue and Brain Fog (22%); and Trouble Sleeping (21%). Cognitive Fatigue and Brain Fog were expressed as more bothersome (bothersomeness score 8.5) than physical Fatigue and Exhaustion (7.5). Further analysis revealed that physical and cognitive fatigue symptoms can be exacerbated by Trouble Sleeping. Furthermore, fatigue can perpetuate Trouble Sleeping by aggravating other symptoms and heightening their perceived bothersomeness.

The Pain symptom domain included three individual symptom concepts: Headaches and Migraines (16% commonness); Joint, Bone and Muscle pain (33%); and ‘Fibromyalgia’ and ‘General Body Pain’ (19%). While the latter two concepts may seem thematically linked, the terms included in them did not often appear together, and these concepts had different associations with other concepts. From patients’ perspectives, pain linked to specific body parts (e.g. eyes, throat) represented a distinct experience from pain impacting the whole body (e.g. ‘fibromyalgia’).

Sjögren’s and its symptoms affected patients in four key domains of HRQoL impact. Table 2 shows the commonness of HRQoL impact domains and concepts. Figure 4 details the association between the HRQoL impact domains and the ‘impactful’ and ‘very impactful’ symptom domains. Fatigue, Energy and Sleep had the highest average association, with a score > 0.75 across all HRQoL impact domains.

Symptom domain associations with HRQoL impact domains. Asterisk indicates an association score > 0.75

Daily Functioning (72% commonness) refers to the impact on patients’ everyday routines. Sjögren’s syndrome constrains what patients feel fit and able to do and burdens them with a need to keep up with medical appointments and treatments. This domain included two very commonly mentioned HRQoL concepts: Activity Constraints and Treatment Burden. The symptom domains of Fatigue, Energy and Sleep and Dry Mouth and Throat were most closely associated with Activity Constraints (association score for both 1.0). Dry Mouth and Throat and Dry Eye had the closest association with Treatment Burden (association score for both 1.0.

The Social Wellbeing (35%) HRQoL impact domain relates to patients with Sjögren’s feeling lonely and isolated, finding it harder to maintain close relationships and intimacy and/or to socialise or feel socially confident. The symptom domain of gynaecological issues was most closely associated with social wellbeing (association score 1.0). This domain was also found to be closely associated with Fatigue, Energy and Sleep (association score 0.8).

Sjögren’s impacts patients’ financial health (31%) by reducing their ability to work and to achieve a good salary while simultaneously increasing their costs due to the need to purchase treatments and remedies. For financial health, Fatigue, Energy and Sleep had the highest association with the impact on both concepts of Income and Costs (association score for both 0.77).

Finally, Sjögren’s impacts patients’ psychological wellbeing (30%), causing them to feel more fearful and anxious, frustrated, sad and depressed, misunderstood and even ashamed. Thus, emotional balance was most closely associated with psychological wellbeing (association score 1.0). Fatigue, Energy and Sleep had the second closest association (association score 0.76).

Patient posts from the EU countries (France, Italy, Spain, Germany) and those from China were more likely to discuss any HRQoL impact domain than posts from the predominantly English-speaking countries studied (US, UK, Canada, Australia). Patients in China were more likely than patients in other countries to mention the impact of Sjögren’s on daily functioning—specifically on their need to take extra rest (43% in China vs. 33% of the full sample). Patients in the EU were more likely to discuss psychological wellbeing and financial health.