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Patients' perception of DED and its relation with time to diagnosis and quality of life: an international and multilingual survey
  1. Marc Labetoulle1,
  2. Maurizio Rolando2,
  3. Christophe Baudouin3,
  4. Gysbert van Setten4
  1. 1Ophthalmology Department, Bicêtre Hospital, APHP, South Paris University, Le Kremlin-Bicêtre, France
  2. 2University of Genoa, Genoa, Italy
  3. 3Quinze-Vingts National Ophthalmology Hospital, Paris, France
  4. 4St Eriks Eye Hospital, Stockholm, Sweden
  1. Correspondence to Professor Marc Labetoulle, Ophthalmology Department, Bicêtre Hospital, APHP, South Paris University, 78 rue du Général Leclerc, Le Kremlin-Bicêtre Cedex 94275, France; marc.labetoulle{at}


Background/aims To improve understanding of patients' experience and perception of dry eye disease (DED) and its impact on quality of life (QoL).

Methods This survey was observational, non-interventional and cross-sectional. The survey was conducted online on 706 patients with DED from five European countries (France, Germany, Italy, Spain and the UK). All patients met the following inclusion criteria: 40 years or older with DED diagnosed by a healthcare professional (HCP), not wearing contact lenses and using tear substitutes daily for at least 6 months. The survey (performed in the five native languages) included 9 screening questions (inclusion criteria) and 26 complementary questions about patients' demography, disease history, DED diagnosis, use of relief treatments, perceptions of DED condition and its impact on QoL.

Results Overall, 218 of 706 (31%) patients perceived DED as a ‘disease’ or even a ‘handicap’, and 468 of 706 (66%) as a ‘discomfort’. High impact of DED on patients' QoL was associated with negative perception, delay in diagnosis, visits to more than one HCP before diagnosis and high frequency of treatment use. This survey also provided us with a list of language-specific keywords that patients used most frequently to spontaneously describe their condition.

Conclusions Findings showed that negative perception of DED, delayed diagnosis and high frequency of treatment use were inter-related, and that all have a negative impact on patients' QoL. The generated language-specific keywords used to describe DED could serve as the basis for a comprehensive QoL questionnaire to be used in clinical settings.

  • Ocular surface
  • Treatment Medical
  • Tears

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  • Contributors The survey was designed by ML, MR, GvS and conducted by Véronique Zimeray, PharmD, Listening Pharma (Boulogne-Billancourt, France) who was paid for her assistance. Paid survey management and data analysis and proofreading were performed by Benjamin W Gallarda, PhD, Ogilvy CommonHealth (Paris, France). Paid editorial assistance was provided by Scinopsis Medical Writing (Fréjus, France). Santen (Evry, France) provided funding for the development of this survey and the manuscript. The authors were involved with the entire process from design to critical revision of the manuscript, and maintained complete control over the direction and content of the paper.

  • Funding Santen (Evry, France) provided funding for the development of this survey and the manuscript.

  • Competing interests ML is an occasional consultant for Alcon, Allergan, MSD, Santen and Théa. CB is a consultant for, or has received research grants from, Alcon, Allergan, Santen and Théa. MR is a consultant for, or has received research grants from, Alcon, Allergan, Bausch & Lomb, Santen, TRB Chemedica, Farmigea and Théa. GvS is a consultant for Santen, Théa and medical GmbH, and has received honoraria as a lecturer from Santen.

  • Ethics approval Société Française d'Ophtalmologie.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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