Background: Neurotrophic 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. Methods: This 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. Results: Fourteen 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. Conclusions: The 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.
delivery (via punctal plug, subconjunctival or intracameral route) and implant (p¼0.011) based upon effectiveness and cost. Other factors influencing patient preference were clear center vision, outdoor mobility, travelling distance during follow-ups, and treatment-associated symptoms (vision blurring, drowsiness, or inhibition of sexual performance). No studies assessing surgical treatment options were identified. CONCLUSIONS: Evidence clearly indicates that glaucoma patients have preference towards more efficacious and less frequent medication regimens. In addition, patients are willing to accept novel treatment options such as surgical implants and sustained release medication depots. However, scarce evidence necessitates the need for more research focusing on patient preferences towards surgical treatment options. OBJECTIVES:To estimate preferences and willingness to pay (WTP) for treatment features of omalizumab among people with CIU or experiencing dermatological conditions with similar symptoms in Australia. METHODS: Treatment attributes and levels were informed by literature and clinicians, covering 3 areas: treatment administration follow up and cost, efficacy and safety. In the online discrete choice experiment (DCE), respondents saw 8 different treatment scenarios showing standard therapy against two hypothetical treatments. A rank ordered logit model provided estimates of marginal utilities and latent class analyses employed to model preference heterogeneity. RESULTS: Overall 124 patients completed the survey including 26 CIU patients (16 were severe with UAS7 28+). Attributes relating to efficacy (Itchiness, Swelling, Impact on life activities, Sleep, Psychological aspects, limitations and physical appearance) were significant, with increasing itchiness, impact on life activities and worsening of physical appearance negatively driving choices (p<0.01). Patients preferred omalizumab compared to standard therapy (p<0.01). CIU patients appear less price sensitive compared to noneCIU patients (p<0.05). Latent class analyses identified three preference segments: 50% of the sample valued efficacy with WTP of $42.66 to $90 for level improvements across efficacy attributes (p<0.05). The second largest segment (35%) was price-sensitive and did not consider most benefits of treatment beyond price (p<0.01); 15% were price insensitive. CONCLUSIONS: The findings demonstrate patient preference for omalizumab and specifically the efficacy of a treatment, highlighting the importance of quality of life among both CIU and those suffering from similar skin conditions. However differences between groups was apparent, with psychological aspects of treatment influencing treatment choice among non-CIU patients more than CIU patients, and cost being a significant driver of treatment choice for non-CIU patients but less so for CIU patients.
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