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Table 4 Concept Comparison across Literature and Patient Report

From: Development of the neurotrophic keratopathy questionnaire: qualitative research

ConceptReported in Literature: NKReported in Literature: Related ConditionsaSpontaneousProbedTotal (N = 14)
N, %
Item in NKQ
RednessXX012 (86%)12 (86%)5
Sensitivity to light (photophobia)NRX6 (43%)5 (36%)11 (79%)7
General discomfortXX2 (14%)7 (50%)9 (64%)6
DrynessXX3 (21%)6 (43%)9 (64%)3
Reduction in visual acuityXX6 (43%)3 (21%)9 (64%)1
Blurred vision (or glare disability)NRX4 (29%)4 (29%)8 (57%)2
Burning or stingingNRX05 (36%)5 (36%)4
Irregular blinkingXX01 (7%)1 (7%)8
Decreased corneal sensationb (hypoesthesia or anesthesia)XXNANANA9
Increased or decreased tear productioncXXNANANA10
Tearing (watery eyes)cNRXNANANA11
Pain or discomfort (acute, chronic, or prodromal)dXX1 (7%)2 (14%)3 (21%)None
Ocular fatigueeNRX08 (57%)8 (57%)None
Irritation or sorenesseNRX2 (14%)5 (36%)7 (50%)None
Itching (scratchiness)eNRX07 (50%)7 (50%)None
Foreign body sensation (sand, grit in eye)eNRX06 (43%)6 (43%)None
Inflammation (swelling of eye and/or eyelid)eXX1 (7%)3 (21%)4 (29%)None
Forced closing of eyelidseNRX02 (14%)2 (14%)None
DischargeeNRX1 (7%)1 (7%)2 (14%)None
HeadacheseNRNR02 (14%)2 (14%)None
Sores or rash around the eyeseNRX01 (7%)1 (7%)None
Cutaneous blisteringeNRX01 (7%)1 (7%)None
Punched-out oval or circular shapeeNRX000 (0%)None
Sensitivity to coldfNRNR1 (7%)01 (7%)None
Increased optic pressurefNRNR1 (7%)01 (7%)None
BleedingfNRNR1 (7%)01 (7%)None
Decreased peripheral visionfNRNR1 (7%)01 (7%)None
FloatersfNRNR1 (7%)01 (7%)None
  1. aRelated conditions: dry eye, herpetic infections, and limbal stem-cell deficiency
  2. bDecreased corneal sensation was not reported by participants; however, clinical confirmation of this symptom is required for NK diagnosis
  3. cTear production and watery eyes were not reported by participants; however, NK is caused by damage to the trigeminal nerve, which helps maintain the anatomical integrity of the ocular surface, including tear gland functioning, so assessment of this symptom is clinically important to NK
  4. dItem 6 asks about discomfort but not pain
  5. eBased on the review of the literature, several symptom probes were included in the interview guide to determine if the symptoms should be included in the questionnaire. For the most part, the symptoms were only reported by participants when probed, indicating these symptoms are of lower importance to patients
  6. fThese symptoms were not listed in the interview guide and were spontaneously reported by participants
  7. Abbreviations: NA Not asked, NK Neurotrophic keratopathy, NKQ Neurotrophic Keratopathy Questionnaire, NR Not reported, X Reported