Abstract
BackgroundNeurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Little is known about the NK experience from the patients’ perspective. The objectives of this study were to examine the symptomatic experience and impacts of NK on patients and assess the overall comprehension, relevance, and content validity of a new questionnaire.MethodsThis was a cross-sectional, qualitative study conducted with NK patients with varying levels of disease severity, recruited from one clinical site. One-on-one interviews using concept elicitation and cognitive interviewing techniques were conducted.ResultsFourteen NK patients participated; 64.3% were female (n = 9), mean age was 65.7 ± 13.3, and 14.3% (n = 2), 21.4% (n = 3), and 64.3% (n = 9) were classified as Mackie stage I, stage II, or stage III, respectively. Participants reported 24 concepts, including: redness (n = 12, 86%), sensitivity to light (n = 11, 79%), general discomfort (n = 9, 64%), dry eye (n = 9, 64%), reduced visual acuity (n = 9, 64%), blurred vision (n = 8, 57%), and eye fatigue (n = 8, 57%). No new concepts were reported after the 13th interview. The most frequently reported impacts included frustration (n = 10, 71%), driving impairment (n = 8, 57%), reading impairment (n = 7, 50%), difficulty watching television (n = 7, 50%), and concern with potentially losing their eyesight due to NK (n = 6, 43%). Participants provided positive feedback on the draft NK Questionnaire (NKQ) and felt that it was comprehensive and relevant to their experience with NK. Additionally, the recall period, instructions, item concepts, and response options were well-understood by participants. Minor revisions were made to the tool for consistency (i.e., the timeframe “in the past 7 days” was added to items 12–14); item 14 was modified to include “how often”; examples were added to item 9.ConclusionsThe results of the concept elicitation portion of the qualitative study support the content validity of the draft NKQ. The clinically significant concepts identified in the literature and raised during concept elicitation are included as items in the questionnaire. Further assessment of the psychometric properties should be conducted in support of this new tool to measure the effect of new treatments on symptoms and impacts associated with NK.
Highlights
Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye
NK is characterized by a reduction in or loss of corneal sensitivity associated with poor corneal healing and can result in spontaneous epithelial breakdown, ulceration, infection, melting, and perforation of the cornea; it can lead to permanent loss of vision in the affected eye and anatomical loss of the eye [2]
The underlying cause of NK varied across the sample (Table 3)
Summary
Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Neurotrophic keratopathy (NK), known as neurotrophic keratitis or neuroparalytic keratitis, is a rare disease of the cornea that is caused by lesions on the fifth (trigeminal) cranial nerve or its ophthalmic branch [1]. NK is characterized by a reduction (hypoesthesia) in or loss (anesthesia) of corneal sensitivity associated with poor corneal healing and can result in spontaneous epithelial breakdown, ulceration, infection, melting, and perforation of the cornea; it can lead to permanent loss of vision in the affected eye and anatomical loss of the eye [2]. NK may be a complication of radiation therapy Congenital causes, such as Ridley-Day syndrome, anhidrotic ectodermal dysplasia, Moebius syndrome, Goldenhar syndrome, and congenital corneal anesthesia, are very rare [8]
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