Relationship between clinical parameters and quality of life in primary Sjögren's Syndrome: a prospective study.

OBJECTIVES: To quantify the impact of dry eye disease (DED) on health and vision related quality of life (HR-QOL, VR-QOL) in patients with Primary Sjögren's Syndrome (pSS). METHODS: Thirty-four participants with a confirmed diagnosis of pSS as per the 2016 ACR EULAR criteria participated. Main outcome measures included ocular surface parameters and HR-QOL and VR-QOL questionnaires. Clinical examination included visual acuity, Schirmer I testing, ocular surface staining (OSS) and measurement of tear film breakup time. The questionnaires included Ocular Surface Disease Index, National Eye Institute Visual Function Questionnaire-25, Short Form-36 (SF-36) and EULAR Sjogren's Syndrome Patient Reported Index. RESULTS: Despite the majority of participants (28 female, 6 male, mean age 61.3 years) having attained LogMAR 0.3 or better visual acuity, participants scored low on VR-QOL measures, representing DED related fluctuation in functional vision. All participants suffered from moderate to severe DED. OSS did not correlate with DED symptoms or QOL parameters. Lubricant usage and symptom severity had a statistically moderate to strong negative correlation with VR-QOL and HR-QOL. This was most evident in relation to physical and physiological wellbeing. Compared with normative data, participants had a lower HR-QOL in all scales of the SF-36 ((MD = 9.91 ± 5.16); t(7) = 5.43, p = 0.001). CONCLUSIONS: Participants with pSS have a lower perceived QOL especially in relation to physical and mental wellbeing, correlating to severity of DED symptoms and treatment burden. Clinical signs do not align with symptoms. Therefore, clinicians should remain cognisant, adjusting treatment in accordance with patient reported perceptions.

Quality of life questionnaires validate a remote approach to ophthalmic management of primary Sjögren's syndrome.

Those with underlying autoimmune conditions were met with unparalleled challenges and were disproportionately affected by the COVID-19 pandemic. As such, we aimed to measure the impact of the pandemic on symptoms and the health and vision related quality of life (HR-QoL, VR-QoL) in patients with Primary Sjögren's Syndrome (pSS). Nineteen (55.9%) participants returned questionnaires for analysis, (17 female and 2 male, 61.6 years ± 9.9). There was no significant change in participants HR-QoL or VR-QoL, indicating that those with pSS remained resilient with regard to their physical and mental health throughout the pandemic. Furthermore, QoL was maintained despite 73.7% of participants having had outpatient appointments cancelled, delayed or rescheduled. Participants reported a lower QoL and feeling tenser in the COV19-QoL (3.3 ± 1.4 and 3.2 ± 1.3) representing feelings of apprehension and stress felt amongst the general population since the pandemic. Overall, and in spite of the concern caused by the COVID-19 pandemic for patients with autoimmune diseases, the health and well-being of patients with pSS remained stable. These findings strongly support the use of validated HR and VR-QoL questionnaires as an adjunct to the telemedicine consultation when assessing patients with pSS, offering an alternative to face-to-face consultations in post-pandemic era.