{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T15:14:03Z","timestamp":1787498043493,"version":"build-2736575974"},"reference-count":50,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,7,20]],"date-time":"2023-07-20T00:00:00Z","timestamp":1689811200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2023,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Sj\u00f6gren's (\u2018SHOW\u2010grins\u2019) is a chronic debilitating autoimmune disease characterised by dry eyes and dry mouth, secondary to reduced exocrine function of both the lacrimal and salivary glands. The persistent, severe\u00a0and serious systemic complications of Sj\u00f6gren's are poorly understood and often unappreciated, resulting in significant morbidity and treatment burden. This study aimed to explore the experiences of those living with Sj\u00f6gren's, specifically access to healthcare and attitude towards telemedicine. Additionally, we sought to collect information regarding the impact of the pandemic on their quality of life (QoL).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>One hundred and ninety\u2010four individuals attended an Irish Sj\u00f6gren's Webinar. Attendees were invited to participate in two online surveys after the webinar. The first survey gathered information related to demographics, disease\u00a0and experiences during the COVID\u201019 pandemic. A combination of bespoke items and validated questionnaires (EULAR Sj\u00f6gren's Syndrome Patient Reported Index [ESSPRI], COVID\u201019 Impact on Quality of Life\u00a0[COV19\u2010QoL]) was used. The second survey consisted of a shortened Telehealth Usability Questionnaire. Both were prepared in collaboration with a patient advocate.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Survey 1:\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200976; response rate\u2009=\u200939.2%. Thirty\u2010one respondents (41.4%) to survey 1 reported a delay of \u22655 years between the onset of symptoms and diagnosis. Dry mouth was the most common symptom experienced (76.8%,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200963), followed by dry eye (74.4%,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200961), fatigue (57.3%,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200947) and joint pain (53.7%,\u00a0\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200944), but a range of other symptoms were also reported. COV19\u2010QoL results indicated that the pandemic had a detrimental effect on participants' overall QoL (4.0\u2009\u00b1\u20091.0) and physical health (4.0\u2009\u00b1\u20090.8) in particular. COV19\u2010QoL and ESSPRI scores were moderately correlated (0.36,\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u2009.002). Over 70% of respondents had a medical appointment cancelled, delayed or rescheduled (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200960). Survey 2:\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200957; response rate\u2009=\u200929.4%. Those that had interacted with telemedicine reported largely positive experiences with the virtual model.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Clinicians should be aware of the range of symptoms experienced by patients with Sj\u00f6gren's beyond those of sicca (dry eye and dry mouth) and fatigue. COVID\u201019 has negatively influenced the self\u2010reported health and well\u2010being of those with Sj\u00f6gren's, particularly those with higher symptom scores. It is vital that optimised telemedicine models are implemented to ensure continuity in the provision of healthcare for those with chronic illness such as Sj\u00f6gren's and in preparation for possible future pandemics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>A group of people living with Sj\u00f6gren's co\u2010designed the structure and content of the webinar where the survey was shared. A public and patient involvement\u00a0(PPI) contributor also collaborated in the selection of questionnaires used in the study, ensuring that the questions asked would best reflect the priorities of patients. They contributed to the writing of this manuscript as co\u2010authors. Additionally, the research team and Sj\u00f6gren's patients who contributed to this work have gone on to establish Sj\u00f6gren's Research Ireland, a collaboration between patient advocates, researchers\u00a0and PPI facilitators.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.13823","type":"journal-article","created":{"date-parts":[[2023,7,20]],"date-time":"2023-07-20T06:55:14Z","timestamp":1689836114000},"page":"2252-2263","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Beyond dry eye: The greater extent of Sj\u00f6gren's systemic disease symptoms, the impact of COVID\u201019 and perceptions towards telemedicine identified through a patient co\u2010designed study"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1369-7973","authenticated-orcid":false,"given":"Emily","family":"Greenan","sequence":"first","affiliation":[{"name":"School of Pharmacy and Biomolecular Sciences RCSI, University of Medicine and Health Sciences Dublin Ireland"},{"name":"Department of Ophthalmology RCSI University of Medicine and Health Sciences Dublin Ireland"},{"name":"Royal Victoria Eye and Ear Hospital Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gr\u00e1inne","family":"Tynan","sequence":"additional","affiliation":[{"name":"Sj\u00f6gren's Ireland Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deirdre","family":"Collins","sequence":"additional","affiliation":[{"name":"Sj\u00f6gren's Ireland Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2171-0418","authenticated-orcid":false,"given":"Conor C.","family":"Murphy","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology RCSI University of Medicine and Health Sciences Dublin Ireland"},{"name":"Royal Victoria Eye and Ear Hospital Dublin 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