Do Patients With Keratoconus Have Minimal Disease Knowledge?

Baenninger, Philipp B.; Bachmann, Lucas M.; Ritzmann, Markus; Blaser, Frank; Gatzioufas, Zisis; Alder, Marco; Handzic, Armin; Iselin, Katja; Kaufmann, C.; Thiel, Michael

doi:10.1097/ico.0000000000002501

Cited by 10 publications

(41 citation statements)

References 11 publications

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“…We did not identify clinical features corelated with sex or age, however, the sex and age could potentially influence study results regarding the life habits. The absence of differences in clinical parameters between adult and adolescent patients indicates a rapid progression in the latter [57][58][59], pointing to the importance of increasing patient awareness [60] as well as early diagnosis due to substantial risk of progression. Generally, we focused on the regular patients, who best represent the overall patient population of the clinic.…”

Section: Plos Onementioning

confidence: 99%

Non-allergic eye rubbing is a major behavioral risk factor for keratoconus

et al. 2023

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Since the environmental, behavioral, and socioeconomic factors in the etiology of keratoconus (KTCN) remain poorly understood, we characterized them as features influencing KTCN phenotype, and especially affecting the corneal epithelium (CE). In this case-control study, 118 KTCN patients and 73 controls were clinically examined and the Questionnaire covering the aforementioned aspects was completed and then statistically elaborated. Selected KTCN-specific findings were correlated with the outcomes of the RNA-seq assessment of the CE samples. Male sex, eye rubbing, time of using a computer after work, and dust in the working environment, were the substantial KTCN risk factors identified in multivariate analysis, with ORs of 8.66, 7.36, 2.35, and 5.25, respectively. Analyses for genes whose expression in the CE was correlated with the eye rubbing manner showed the enrichment in apoptosis (TP53, BCL2L1), chaperon-related (TLN1, CTDSP2, SRPRA), unfolded protein response (NFYA, TLN1, CTDSP2, SRPRA), cell adhesion (TGFBI, PTPN1, PDPK1), and cellular stress (TFDP1, SRPRA, CAPZB) pathways. Genes whose expression was extrapolated to the allergy status didn’t contribute to IgE-related or other inflammatory pathways. Presented findings support the hypothesis of chronic mechanical corneal trauma in KTCN. Eye-rubbing causes CE damage and triggers cellular stress which through its influence on cell apoptosis, migration, and adhesion affects the KTCN phenotype.

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Section: Plos Onementioning

confidence: 99%

Non-allergic eye rubbing is a major behavioral risk factor for keratoconus

et al. 2023

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“…In a previous study [13] assessing MKK in patients, a questionnaire was developed on the basis of a literature review and discussions held by a focus group of four corneal specialists and two contact lens-fitting optometrists. They defined the minimal knowledge an average keratoconus patient should have in relation to definition, risks and triggers, symptoms and treatment options of the disease.…”

Section: Questionnaire Developmentmentioning

confidence: 99%

“…They were instructed to restrict these to the most common set of characteristics that should be known by every keratoconus patient, excluding uncommon factors or unusual presentations of symptoms. In telephone interviews among ophthalmologists, we employed the same questionnaire than the one used to assess MKK in patients [13]. Although ophthalmologists arguably know more about the condition than patients, we refrained from expanding the questionnaire in order to ensure uniform assessment of patients and physicians.…”

Section: Questionnaire Developmentmentioning

confidence: 99%

“…However, active participation requires patients to have at least a minimal level of understanding of the disease [12]. In a previous study, corneal specialists defined "minimal keratoconus knowledge" (MKK) regarding definition, risk factors, symptoms and possible treatment options of keratoconus and found a dramatic lack of knowledge in keratoconus patients [13]. Given the evidence for a high rate of undiagnosed keratoconus patients in the general population, we wanted to know if lack of knowledge and awareness of keratoconus in general ophthalmologists in Switzerland could be a contributing factor.…”

Section: Introductionmentioning

confidence: 99%

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Mismatch of corneal specialists’ expectations and keratoconus knowledge in general ophthalmologists - a prospective observational study in Switzerland

et al. 2021

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Background To assess whether Swiss general ophthalmologists have the minimal keratoconus knowledge that corneal specialists would expect them to have. Methods Corneal specialists defined “minimal keratoconus knowledge” (MKK) with respect to definition, risk factors, symptoms and possible treatment options of keratoconus. A telephone interview survey was conducted among one hundred ophthalmologists (mean age 51.9 years (SD 9.5), 60 % male) from the German-speaking part of Switzerland. For each participant, years of work experience, number of keratoconus patients seen per year and access to a topography device were obtained. We calculated the proportion of MKK and examined in multivariate analyses whether ophthalmologists with access to topography and with greater work experience performed better than other groups. Results No single ophthalmologist had MKK. The mean MKK was 52.0 %, and the range was 28.6–81.0 %. Per 10 years of working in private practice, the MKK decreased by 8.1 % points (95 % CI: -14.2, -2.00; p = 0.01). Only 24 % of participants correctly recalled the definition of keratoconus, 9 % all risk factors, 5 % all symptoms and 20 % all treatment modalities. The MKK values were not associated with the number of keratoconus patients seen per year and the availability of topography to diagnose keratoconus. Conclusions There is a substantial mismatch between corneal specialist’ expectations and general ophthalmologists’ knowledge about keratoconus. The low recall of symptoms and risk factors may explain why ophthalmologists diagnose relatively few cases of keratoconus, resulting in inefficient care delivery and delayed intervention.

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“… 15 A recent Swiss study of patients with keratoconus identified dramatically little knowledge about the typical signs, risk factors, and treatment options for keratoconus, and patients with a university degree showed only a moderately higher knowledge level. 16 Similarly, in this study, keratoconus literacy was low, with few parents reporting satisfactory understanding of keratoconus currently or at the time of diagnosis. Parents from socioeconomically marginalized backgrounds (ie, limited English proficiency, lower income, lower educational attainment, and unreliable transportation) endorsed poorer keratoconus literacy than parents from more privileged backgrounds.…”

Section: Discussionmentioning

confidence: 52%

Parental Keratoconus Literacy: A Socioeconomic Perspective

Ahmad¹,

Turner²,

Hoppe³

et al. 2022

OPTH

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Purpose To assess the impact of parental socioeconomic status and keratoconus literacy on pediatric eye rubbing and keratoconus severity. Methods In this mixed-methods study, pediatric keratoconus patients (age ≤ 18 years) were retrospectively identified. Sociodemographic and clinical characteristics were extracted from the electronic medical record (EMR). Telephone surveys were subsequently conducted to assess parental keratoconus literacy, receipt of counseling on keratoconus prevention, eye rubbing, and household socioeconomic factors not available in the EMR. Parents reporting poor keratoconus literacy were probed via semi-structured interview to explore barriers to their understanding. Results Forty-eight patients met inclusion criteria, 22 (46%) of whom were reached by telephone. Most patients were insured by Medicaid (73%) and current eye rubbers (82%). Few parents reported good or excellent keratoconus literacy now (32%) or at the time of diagnosis (18%). Parents with a high-school education, limited English proficiency, lower income level, and Medicaid insurance tended to have lower keratoconus literacy, though this was not statistically significant. Parental keratoconus literacy was not correlated with disease severity. High-school education, limited English proficiency, lower income level, and Medicaid insurance were correlated with steeper keratometry readings, which was statistically significant for high-school education. In-depth interviews revealed parents felt unconfident with eye health in general and perceived a personal responsibility for learning more. Conclusion This is the first study exploring keratoconus literacy from a socioeconomic perspective, demonstrating lower literacy among socioeconomically marginalized parents and a tendency toward more severe disease in their children.

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Do Patients With Keratoconus Have Minimal Disease Knowledge?

Cited by 10 publications

References 11 publications

Non-allergic eye rubbing is a major behavioral risk factor for keratoconus

Non-allergic eye rubbing is a major behavioral risk factor for keratoconus

Mismatch of corneal specialists’ expectations and keratoconus knowledge in general ophthalmologists - a prospective observational study in Switzerland

Parental Keratoconus Literacy: A Socioeconomic Perspective

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