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The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome

INTRODUCTION: Previous studies have examined the patient experience regarding the diagnosis and management of dry eye disease (DED). The current study explored the ways in which the DED diagnostic pathway differs for those living with and without Sjögren’s syndrome (SS), to identify aspects that inf...

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Autores principales: Figueiredo, Francisco C., Baudouin, Christophe, Rolando, Maurizio, Messmer, Elisabeth M., van Setten, Gysbert, Garrigue, Jean-Sébastien, Garrigos, Genevieve, Labetoulle, Marc
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079601/
https://www.ncbi.nlm.nih.gov/pubmed/33792865
http://dx.doi.org/10.1007/s40123-021-00341-6
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author Figueiredo, Francisco C.
Baudouin, Christophe
Rolando, Maurizio
Messmer, Elisabeth M.
van Setten, Gysbert
Garrigue, Jean-Sébastien
Garrigos, Genevieve
Labetoulle, Marc
author_facet Figueiredo, Francisco C.
Baudouin, Christophe
Rolando, Maurizio
Messmer, Elisabeth M.
van Setten, Gysbert
Garrigue, Jean-Sébastien
Garrigos, Genevieve
Labetoulle, Marc
author_sort Figueiredo, Francisco C.
collection PubMed
description INTRODUCTION: Previous studies have examined the patient experience regarding the diagnosis and management of dry eye disease (DED). The current study explored the ways in which the DED diagnostic pathway differs for those living with and without Sjögren’s syndrome (SS), to identify aspects that influence the patient experience and associated quality of life (QoL). METHODS: An observational/descriptive, non-interventional, retrospective, self-reported online survey was conducted among adults living in France, Spain and Italy who were diagnosed with DED (with/without SS), were using topical DED treatments (≥ 6 months), and were not contact lens users. Recruitment was via an online database for non-SS participants and through local patient advocacy groups for SS respondents. RESULTS: The analysis included 827 respondents; 416 (50.3%) had SS and 82% were female. The mean age was 55 (SD 11; range 16–99) years. The mean age at diagnosis was 46 (SD 12; range 13–78) years and 50 (SD 10; range 21–73) years for SS and non-SS groups, respectively (p < 0.0001). The mean time to diagnosis was extended for SS participants [32 (SD 62) months] versus non-SS individuals [8.6 (SD 28) months (p < 0.0001)] and was associated with reduced QoL scores (r = 0.113; p = 0.0169). More SS participants (31%) consulted ≥ 4 healthcare professionals (HCPs) before DED diagnosis, versus non-SS individuals (6%) (p < 0.0001). Diagnosing clinician varied for SS respondents according to country, probably due to differences in healthcare systems/structures. More SS participants viewed their condition as a handicap than a discomfort, reporting greater QoL impact (p < 0.0001). CONCLUSIONS: Patient experiences in DED diagnosis vary substantially when comparing SS and non-SS individuals. Time to diagnosis significantly impacts QoL for SS patients, who see more HCPs ahead of DED diagnosis. The number of HCPs consulted before diagnosis and perceptions of DED are important for both groups. Country-specific variations highlight opportunities to improve consistency and efficiency across DED diagnostic pathways. These data should be considered alongside existing evidence from high-quality sources (e.g. clinical records). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-021-00341-6.
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spelling pubmed-80796012021-05-05 The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome Figueiredo, Francisco C. Baudouin, Christophe Rolando, Maurizio Messmer, Elisabeth M. van Setten, Gysbert Garrigue, Jean-Sébastien Garrigos, Genevieve Labetoulle, Marc Ophthalmol Ther Original Research INTRODUCTION: Previous studies have examined the patient experience regarding the diagnosis and management of dry eye disease (DED). The current study explored the ways in which the DED diagnostic pathway differs for those living with and without Sjögren’s syndrome (SS), to identify aspects that influence the patient experience and associated quality of life (QoL). METHODS: An observational/descriptive, non-interventional, retrospective, self-reported online survey was conducted among adults living in France, Spain and Italy who were diagnosed with DED (with/without SS), were using topical DED treatments (≥ 6 months), and were not contact lens users. Recruitment was via an online database for non-SS participants and through local patient advocacy groups for SS respondents. RESULTS: The analysis included 827 respondents; 416 (50.3%) had SS and 82% were female. The mean age was 55 (SD 11; range 16–99) years. The mean age at diagnosis was 46 (SD 12; range 13–78) years and 50 (SD 10; range 21–73) years for SS and non-SS groups, respectively (p < 0.0001). The mean time to diagnosis was extended for SS participants [32 (SD 62) months] versus non-SS individuals [8.6 (SD 28) months (p < 0.0001)] and was associated with reduced QoL scores (r = 0.113; p = 0.0169). More SS participants (31%) consulted ≥ 4 healthcare professionals (HCPs) before DED diagnosis, versus non-SS individuals (6%) (p < 0.0001). Diagnosing clinician varied for SS respondents according to country, probably due to differences in healthcare systems/structures. More SS participants viewed their condition as a handicap than a discomfort, reporting greater QoL impact (p < 0.0001). CONCLUSIONS: Patient experiences in DED diagnosis vary substantially when comparing SS and non-SS individuals. Time to diagnosis significantly impacts QoL for SS patients, who see more HCPs ahead of DED diagnosis. The number of HCPs consulted before diagnosis and perceptions of DED are important for both groups. Country-specific variations highlight opportunities to improve consistency and efficiency across DED diagnostic pathways. These data should be considered alongside existing evidence from high-quality sources (e.g. clinical records). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-021-00341-6. Springer Healthcare 2021-04-01 2021-06 /pmc/articles/PMC8079601/ /pubmed/33792865 http://dx.doi.org/10.1007/s40123-021-00341-6 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Figueiredo, Francisco C.
Baudouin, Christophe
Rolando, Maurizio
Messmer, Elisabeth M.
van Setten, Gysbert
Garrigue, Jean-Sébastien
Garrigos, Genevieve
Labetoulle, Marc
The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title_full The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title_fullStr The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title_full_unstemmed The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title_short The Enduring Experience in Dry Eye Diagnosis: A Non-Interventional Study Comparing the Experiences of Patients Living With and Without Sjögren’s Syndrome
title_sort enduring experience in dry eye diagnosis: a non-interventional study comparing the experiences of patients living with and without sjögren’s syndrome
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079601/
https://www.ncbi.nlm.nih.gov/pubmed/33792865
http://dx.doi.org/10.1007/s40123-021-00341-6
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