ABSTRACT
PURPOSE: New therapies for retinitis pigmentosa (RP) have led to patients desiring more information about their disease. We assessed the readability, content, and accountability of online health information for RP and its treatments. METHODS: Two internet queries were performed: one pertaining to the condition RP, and another pertaining to treatments of RP. Three analyses were performed on the top search results that met eligibility criteria: (1) A readability analysis produced an average reading level; (2) A content analysis was conducted to score each source on the accuracy, completeness, clarity, and organization of the content; and (3) An accountability analysis was performed to evaluate adherence to accountability benchmarks, including authorship, attribution, disclosure, and currency. RESULTS: The mean reading level was 12.0 (SD = 3.2, 95% CI = 11.0-13.0) for the 8 RP webpages and 12.5 (SD = 3.1, 95% CI = 11.7-13.4) for the 10 RP treatment webpages. The mean content score for RP sites was 21.3 of 32 points (SD = 4.1, 95% CI = 19.5-23.0). The mean content score for RP treatment sites was 5.5 out of 16 points (SD = 3.7, 95% CI = 4.1-6.9). The inter-rater reliability was 0.973 (Cronbach's alpha). For RP sites, the mean accountability score was 2.6 out of 4 points (SD = 0.9, 95% CI = 1.9-3.4). For RP treatment sites, the mean accountability score was 2 out of 4 points (SD = 0.9, 95% CI = 1.4-2.6). CONCLUSION: Our data suggest that the online information available to patients regarding RP and RP treatment options exceeds the AMA-recommended sixth-grade reading level and contains gaps in content relevant to patients.
Subject(s)
Health Literacy , Humans , Comprehension , Reproducibility of ResultsABSTRACT
BACKGROUND: During the COVID-19 pandemic, the Emory Ophthalmic Genetics Service (EOGS) adopted a hybrid telehealth-based care model, with patients undergoing a tailored panel of ancillary tests in addition to a video telehealth encounter with the EOGS physician. This study evaluates patient satisfaction with this model and effectiveness of these encounters in producing a clinical and genetic diagnosis. MATERIALS AND METHODS: A trained interviewer administered a 14-question validated patient satisfaction survey to eligible subjects between October 2020 and April 2021. A mean "favorability index" for patient satisfaction was calculated (maximum score = 5). Rates of ancillary testing, completion of genetic testing, and diagnostic accuracy were also assessed, and compared to results from a control group of EOGS patients that underwent in-person visits. RESULTS: Twenty-one of 33 eligible patients completed the survey. Nine (42.9%) were female, with mean (± SD) age 51.3 ± 13.6 years. The control group was comprised of 49 subjects, predominantly female (71.4%), with mean age 51.5 ± 15.2 years. The mean (range) favorability index was 4.3 (3.1-5.0). Rates of ancillary testing were lower for the telemedicine group vs. the control group: 38.1% vs. 85.7% (p < .001) for electrophysiology; 42.9% vs. 71.4% (p = .03) for perimetry; and 81.0% vs. 95.9% (p = .04) for fundus imaging. Two (11.1%) and 1 (2.8%) (p = .21) subjects in the telehealth and control groups, respectively, did not complete recommended genetic testing. The clinical diagnosis was compatible with the genetic diagnosis in all subjects. CONCLUSIONS: Our results suggest high patient satisfaction and diagnostic accuracy with a hybrid telemedicine-based approach for IRD care, despite lower rates of ancillary testing and no in-person examination.