IMPORTANCE Since 2014, medical industry payment data to physicians have been public via the Open Payments database. Patient opinions regarding these data help us to understand concerns and policymakers to improve reporting mechanisms for such payments.OBJECTIVE To assess patient perceptions of Open Payments information. DESIGN, SETTING, AND PARTICIPANTSThis cross-sectional, questionnaire-based study was conducted in 3 ophthalmology clinic sites of an academic institution in Manhattan, New York City, New York. All patients older than 18 years who were waiting for appointments were eligible. Data were collected from January to June 2016 and analyzed from June to September 2016.EXPOSURES Participants answered 27 questions about the Open Payments database in English or Spanish. Demographic information was also collected.MAIN OUTCOMES AND MEASURES Key questionnaire results included patient awareness of the Open Payments database and perceptions of physicians' financial relationships. Cronbach α validation of the survey was performed, and Poisson multivariable regression analysis was performed to evaluate the association between patient characteristics and responses.RESULTS A total of 407 individuals participated. The mean (SD) age of study participants was 58.8 (17.9) years, and 220 (54.2%) were women. Of these, 30 (7.3% [95% CI, 5.1%-19.4%]) were aware of the Open Payments database, and 109 (26.8% [95% CI, 24.8%-34.0%]) planned to access it. More than half (n = 212; 53.5% [95% CI, 48.6%-58.5%]) wanted to know if their physician receives industry payments. Regarding payments of any kind valuing $100, 161 (41.9% [95% CI, 37.0%-46.9%]) disapproved. Similarly, 178 (45.8% [95% CI, 40.8%-50.7%]) disapproved of $500 payments, and 221 (57.0% [95% CI, 52.0%-61.9%]) disapproved of $25 000 payments. Poisson multivariable regression analysis demonstrated that participants who took the survey in Spanish were 38% more likely to approve of physicians receiving payments than were those who took the survey in English (incidence rate ratio [IRR], 1.38 [95% CI, 1.19-1.59]; P < .001). For every 1 year of age, the likelihood of approval for a physician receiving payments decreased by 1% (IRR, 0.995 [95% CI, 0.99-1.00]; P = .007). Participants with graduate degrees were 20% less likely to approve of physicians receiving payments, compared with those with less than a high school degree (IRR, 0.80 [95% CI, 0.66-0.97]; P = .02). CONCLUSIONS AND RELEVANCEIf the survey is validated, and if these results are generalizable outside of the 3 academic centers in ophthalmology surveyed, the findings suggest that many patients disapprove of physicians receiving payments from industry. However, few patients had accessed the Open Payments database or planned to access it. Further investigation is required to determine if these results can be generalized for other settings.
PURPOSE. To assess whether carriers of ABCA4 mutations have increased RPE lipofuscin levels based on quantitative fundus autofluorescence (qAF) and whether spectral-domain optical coherence tomography (SD-OCT) reveals structural abnormalities in this cohort.METHODS. Seventy-five individuals who are heterozygous for ABCA4 mutations (mean age, 47.3 years; range, 9-82 years) were recruited as family members of affected patients from 46 unrelated families. For comparison, 57 affected family members with biallelic ABCA4 mutations (mean age, 23.4 years; range, 6-67 years) and two noncarrier siblings were also enrolled. Autofluorescence images (308, 488-nm excitation) were acquired with a confocal scanning laser ophthalmoscope equipped with an internal fluorescent reference. The gray levels (GLs) of each image were calibrated to the reference, zero GL, magnification, and normative optical media density to yield qAF. Horizontal SD-OCT scans through the fovea were obtained and the thicknesses of the outer retinal layers were measured.RESULTS. In 60 of 65 carriers of ABCA4 mutations (age range, 9-60), qAF levels were within normal limits (95% confidence level) observed for healthy noncarrier subjects, while qAF levels of affected family members were significantly increased. Perifoveal fleck-like abnormalities were observed in fundus AF images in four carriers, and corresponding changes were detected in the outer retinal layers in SD-OCT scans. Thicknesses of the outer retinal layers were within the normal range.CONCLUSIONS. With few exceptions, individuals heterozygous for ABCA4 mutations and between the ages of 9 and 60 years do not present with elevated qAF. In a small number of carriers, perifoveal fleck-like changes were visible.
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