Differences in minimal disease knowledge of keratoconus patients: results from an international survey

Background/aims The objective of this multicentre, multinational, prospective study was to assess the level of basic understanding that individuals with keratoconus possessed about their condition.Methods We recruited 200 active keratoconus patients who were under regular review, and cornea speciali...

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Main Authors: Francisco C Figueiredo, Conor C Murphy, Vito Romano, Lucas M Bachmann, Bennie H Jeng, Michael A Thiel, Katja C Iselin, Philipp B Baenninger, Sayali P Pradhan, Vishal Vohra, Claude Kaufmann
Format: Article
Language:English
Published: BMJ Publishing Group 2023-01-01
Series:BMJ Open Ophthalmology
Online Access:https://bmjophth.bmj.com/content/8/1/e001164.full
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author Francisco C Figueiredo
Conor C Murphy
Vito Romano
Lucas M Bachmann
Bennie H Jeng
Michael A Thiel
Katja C Iselin
Philipp B Baenninger
Sayali P Pradhan
Vishal Vohra
Claude Kaufmann
author_facet Francisco C Figueiredo
Conor C Murphy
Vito Romano
Lucas M Bachmann
Bennie H Jeng
Michael A Thiel
Katja C Iselin
Philipp B Baenninger
Sayali P Pradhan
Vishal Vohra
Claude Kaufmann
author_sort Francisco C Figueiredo
collection DOAJ
description Background/aims The objective of this multicentre, multinational, prospective study was to assess the level of basic understanding that individuals with keratoconus possessed about their condition.Methods We recruited 200 active keratoconus patients who were under regular review, and cornea specialists established a standard of ‘minimal keratoconus knowledge’ (MKK) that included an understanding of the definition, risk factors, symptoms and treatment options for the condition. We collected data from each participant regarding their clinical characteristics, highest level of education, (para)medical background and experiences with keratoconus within their social circle, and calculated the percentage of MKK attained by each patient.Results Our findings revealed that none of the participants met the MKK standard, with the average MKK score being 34.6% and ranging from 0.0% to 94.4%. Furthermore, our study showed that patients with a university degree, previous surgical intervention for keratoconus or affected parents had a higher MKK. However, age, gender, disease severity, paramedical knowledge, disease duration and best-corrected visual acuity did not significantly affect the MKK score.Conclusions Our study demonstrates a concerning lack of basic disease knowledge among keratoconus patients in three different countries. The level of knowledge exhibited by our sample was only one-third of what cornea specialists would typically anticipate from patients. This highlights the need for greater education and awareness campaigns surrounding keratoconus. Further research is needed to determine the most efficient approaches for enhancing MKK and subsequently improving the management and treatment of keratoconus.
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spelling doaj.art-4ed17e5a413c47478d1956df3c0452672023-12-31T14:55:06ZengBMJ Publishing GroupBMJ Open Ophthalmology2397-32692023-01-018110.1136/bmjophth-2022-001164Differences in minimal disease knowledge of keratoconus patients: results from an international surveyFrancisco C Figueiredo0Conor C Murphy1Vito Romano2Lucas M Bachmann3Bennie H Jeng4Michael A Thiel5Katja C Iselin6Philipp B Baenninger7Sayali P Pradhan8Vishal Vohra9Claude Kaufmann10Department of Ophthalmology, Newcastle University, Newcastle upon Tyne, UK3 Ophthalmology, Royal Victoria Eye an Ear Hospital, Dublin, IrelandDepartment of Ophthalmology, University of Brescia, Brescia, ItalyMedignition AG, Zurich, Switzerland5 Scheie Eye Institute, Department of Ophthalmology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USADepartment of Ophthalmology, Cantonal Hospital, Lucerne, SwitzerlandDepartment of Ophthalmology, Cantonal Hospital, Lucerne, SwitzerlandDepartment of Ophthalmology, Cantonal Hospital, Lucerne, SwitzerlandDepartment of Ophthalmology, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UKDepartment of Ophthalmology, Newcastle University, Newcastle upon Tyne, UKDepartment of Ophthalmology, Cantonal Hospital, Lucerne, SwitzerlandBackground/aims The objective of this multicentre, multinational, prospective study was to assess the level of basic understanding that individuals with keratoconus possessed about their condition.Methods We recruited 200 active keratoconus patients who were under regular review, and cornea specialists established a standard of ‘minimal keratoconus knowledge’ (MKK) that included an understanding of the definition, risk factors, symptoms and treatment options for the condition. We collected data from each participant regarding their clinical characteristics, highest level of education, (para)medical background and experiences with keratoconus within their social circle, and calculated the percentage of MKK attained by each patient.Results Our findings revealed that none of the participants met the MKK standard, with the average MKK score being 34.6% and ranging from 0.0% to 94.4%. Furthermore, our study showed that patients with a university degree, previous surgical intervention for keratoconus or affected parents had a higher MKK. However, age, gender, disease severity, paramedical knowledge, disease duration and best-corrected visual acuity did not significantly affect the MKK score.Conclusions Our study demonstrates a concerning lack of basic disease knowledge among keratoconus patients in three different countries. The level of knowledge exhibited by our sample was only one-third of what cornea specialists would typically anticipate from patients. This highlights the need for greater education and awareness campaigns surrounding keratoconus. Further research is needed to determine the most efficient approaches for enhancing MKK and subsequently improving the management and treatment of keratoconus.https://bmjophth.bmj.com/content/8/1/e001164.full
spellingShingle Francisco C Figueiredo
Conor C Murphy
Vito Romano
Lucas M Bachmann
Bennie H Jeng
Michael A Thiel
Katja C Iselin
Philipp B Baenninger
Sayali P Pradhan
Vishal Vohra
Claude Kaufmann
Differences in minimal disease knowledge of keratoconus patients: results from an international survey
BMJ Open Ophthalmology
title Differences in minimal disease knowledge of keratoconus patients: results from an international survey
title_full Differences in minimal disease knowledge of keratoconus patients: results from an international survey
title_fullStr Differences in minimal disease knowledge of keratoconus patients: results from an international survey
title_full_unstemmed Differences in minimal disease knowledge of keratoconus patients: results from an international survey
title_short Differences in minimal disease knowledge of keratoconus patients: results from an international survey
title_sort differences in minimal disease knowledge of keratoconus patients results from an international survey
url https://bmjophth.bmj.com/content/8/1/e001164.full
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