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.
BSA) measured by PREPI questionnaire -PREPI: Single question in which the patient estimates how many palms of the hand are needed to cover psoriasis patches on the body -A palm of the patient's hand is ~ 1% BSA ■ Psoriatic arthritis diagnosis is self-reported
Introduction Ixekizumab, a highly selective interleukin-17A monoclonal antibody, was approved for the treatment of moderate-to-severe psoriasis (PsO) in 2016. Limited real-world data are available on its effectiveness from a patient’s perspective shortly (2 to 4 weeks) after initiation and upon continuation for 24 weeks. Objective To describe patient-reported clinical and quality-of-life outcomes after initiating ixekizumab using data collected from the United States Taltz® Customer Support Program. Methods This was a 24-week prospective, observational study of commercially insured diagnosis-confirmed adults with PsO. Surveys were completed at weeks 0 (baseline), 2, 4, 8, 12, and 24 and included the Patient Report of Extent of Psoriasis Involvement questionnaire to assess the extent of body surface area (BSA) affected by PsO, itch and pain numeric rating scales, Patient Global Assessment of Disease Severity (PatGA), and Dermatology Life Quality Index (DLQI). Results 523 patients were included in the analysis. Proportions of patients with ≤ 2% BSA involvement were 34.5%, 40.1%, 50.9%, and 79.9% at weeks 0, 2, 4, and 24, respectively; 54.8% and 75.1% achieved National Psoriasis Foundation preferred (BSA ≤ 1%) and acceptable (BSA ≤ 3% or ≥ 75% improvement) responses at week 12, respectively. Improvements of ≥ 4 points in itch and pain were seen by week 2 in 21.1% and 28.0% of patients, respectively, which increased to 63.1% and 64.8% at week 24. Proportions of patients with PatGA scores of 0 (clear) or 1 were 13.4%, 24.1%, 34.0%, and 69.6% at weeks 0, 2, 4, and 24, respectively; and proportions with DLQI total scores of 0 or 1 [no or minimal impact] were 8.4%, 17.6%, 27.3%, and 53.8% at weeks 0, 2, 4, and 24, respectively. Conclusion Patient-reported improvements in BSA, itch, skin pain, dermatology-specific quality of life, and overall PsO severity were seen as early as 2 weeks after initiation and continued through week 24. Supplementary Information The online version contains supplementary material available at 10.1007/s13555-023-00969-1.
OBJECTIVES: Hospital-at-home programs for COPD exacerbations aim to provide care efficiently by shortening or avoiding hospital admissions. The objective was to quantify Dutch patient and informal caregiver preferences for different aspects of hospital-at-home. METHODS: In a discrete-choice experiment, respondents made 14 choices between regular hospital admission (7 days) and two programs in which 3 hospital days were followed by a 4-day treatment at home. The home treatment was described by a set of attributes (see results). Hospital treatment was constant across choice sets. Respondents were patients and their informal care givers who participated in an RCT on the cost-effectiveness of hospital-at-home versus regular hospital care. The data were analyzed in latent-class conditional logit models, which allowed for heterogeneity across groups. RESULTS: A total of 202 questionnaires were returned. 25% of patients and caregivers always opted for hospital treatment, 46% always chose hospital-at-home. For both groups, the best fit was provided by a model with four latent classes, depending on preference for hospital and caregiver burden. All attributes had the expected sign and a significant effect on choices, except for number of home visits. Attribute levels with the strongest impact were hospital preference (for patients, coefficients (depending on class): -5.62 to ϩ3.3), a 5h/day caregiver burden (-3.5 to -0.11) and co-payment of €100 (1.11). Also influential were specialized training for the homecare nurse (0.52), visits by many different nurses (-0.43), high readmission risk (-0.41), GP instead of hospital as contact for emergencies (-0.63), €50 co-payment (-0.48), 3h/day caregiver burden (-0.32), medium readmission risk (-0.24). Results were similar for informal care givers. CONCLUSIONS: A considerable proportion of patients and caregivers have a fixed preference for either admission or hospital-at-home, regardless of the specifics of the program. When choosing between hospital-at home programs, co-payments and the burden on informal caregivers are the principal attributes.
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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