Abstract
Purpose :
Sjögrens Syndrome (SS) is a chronic inflammatory autoimmune disease associated with significant morbidity and treatment burden. SS is characterised by severe dry eyes and dry mouth. The considerable systemic component of SS remains poorly understood, typically extra glandular complications appear 5-10 yrs after initial diagnosis in ≤40% of patients. Thus SS is a growing public health concern which significantly impacts both vision and health related quality of life (QoL) including physical, social, psychological functioning, daily activities and workplace productivity. This study aimed to measure the lived experience of those with SS, and the impact of the pandemic on their QoL, access to healthcare, and attitude towards telemedicine.
Methods :
To reflect the priorities of patients Public Patient Involvement (PPI) contributors (Sjögrens Ireland advocacy group) co-designed an information webinar and were involved in the selection and design of questionnaires used in our online survey. Webinar attendees (n=194) were invited to complete two post event online surveys. Information gathered related to demographics, disease, COVID-19, as well as validated questionnaires; EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI), COV19-QoL, and a shortened Telehealth Usability Questionnaire.
Results :
Thirty-one (41.3%) reported a delay of >5 years between the onset of symptoms and diagnosis. Of the hundred different responses, dry mouth was the most common symptom experienced (67.9% n=53), followed jointly by dry eye and fatigue (55.1%, n=43). COV19-QoL results indicated that the pandemic had a detrimental effect on participants overall QoL (4.0 ± 1.0) and physical health (4.0 ± 0.8) in particular. COV19-QoL and ESSPRI scores moderately correlated (0.36, p=0.002). Over 70% of respondents had a medical appointment cancelled, delayed or rescheduled (n=40). Those that had interacted with telemedicine had positive experiences with the virtual model.
Conclusions :
Clinicians should be aware of the range of symptoms experienced by those with SS beyond that of sicca and fatigue. COVID-19 has negatively influenced the self-reported health and well-being of those with SS, particularly those with higher symptom scores. Thus it is vital that blended models of healthcare, that include telemedicine, are implemented and optimised to ensure equitable provision of healthcare for those with chronic illness such as SS
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.