BackgroundAn enormous amount of information relevant to public health is being generated directly by online communities.ObjectiveTo explore the feasibility of creating a dataset that links patient-reported outcomes data, from a Web-based survey of US patients with multiple sclerosis (MS) recruited on open Internet platforms, to health care utilization information from health care claims databases. The dataset was generated by linkage analysis to a broader MS population in the United States using both pharmacy and medical claims data sources.MethodsUS Facebook users with an interest in MS were alerted to a patient-reported survey by targeted advertisements. Eligibility criteria were diagnosis of MS by a specialist (primary progressive, relapsing-remitting, or secondary progressive), ≥12-month history of disease, age 18-65 years, and commercial health insurance. Participants completed a questionnaire including data on demographic and disease characteristics, current and earlier therapies, relapses, disability, health-related quality of life, and employment status and productivity. A unique anonymous profile was generated for each survey respondent. Each anonymous profile was linked to a number of medical and pharmacy claims datasets in the United States. Linkage rates were assessed and survey respondents’ representativeness was evaluated based on differences in the distribution of characteristics between the linked survey population and the general MS population in the claims databases.ResultsThe advertisement was placed on 1,063,973 Facebook users’ pages generating 68,674 clicks, 3719 survey attempts, and 651 successfully completed surveys, of which 440 could be linked to any of the claims databases for 2014 or 2015 (67.6% linkage rate). Overall, no significant differences were found between patients who were linked and not linked for educational status, ethnicity, current or prior disease-modifying therapy (DMT) treatment, or presence of a relapse in the last 12 months. The frequencies of the most common MS symptoms did not differ significantly between linked patients and the general MS population in the databases. Linked patients were slightly younger and less likely to be men than those who were not linkable.ConclusionsLinking patient-reported outcomes data, from a Web-based survey of US patients with MS recruited on open Internet platforms, to health care utilization information from claims databases may enable rapid generation of a large population of representative patients with MS suitable for outcomes analysis.
A 3 4 7 -A 7 6 6 were FAP Stage 1 and 121 were FAP Stage 2. 41 patients (PND Score ≥ II) reported ≥ 1 hospitalization of ≥ 3 nights in duration due to hATTR-PN in the 12 months prior to enrollment. Mean EQ-5D scores were 0.76 (PND Score I) and 0.59 (PND Score ≥ II). Patients reported perceived health status on the EQ-VAS with mean scores of 66.9 (PND Score I) and 51.3 (PND Score ≥ II). Mean Norfolk-QoL-DN scores were 35.5 (PND Score I) and 66.0 (PND Score ≥ II). 145 patients (131 PND Score ≥ II) reported they cannot work because of hATTR-PN. Mean R-ODS scores were 40.9 and 25.9 for PND Score I and PND Score ≥ II, respectively. ConClusions: These data, from the largest controlled study of patients with hATTR-PN to date, further demonstrate that patients experience considerable burden of illness early in the course of disease and this burden increases with disease progression.objeCtives: Alzheimer's disease (AD) has a detrimental effect on patients' cognition and function, thus adversely affecting patients' quality of life (QoL). This analysis aimed to demonstrate the humanistic burden of prodromal AD or mild cognitive impairment and AD on patients by comparing them to a sample of general population. Methods: Data were taken from 2015 Dementia Disease Specific Programme (DSP) and the 2014 Health Survey for England (HSE). The former is a cross-sectional survey of physicians and patients with cognitive impairment (CI) in 5 major EU countries and US, while the latter is a general population sample of adults and children, representative of whole English population at both national and regional level. Both sources included EuroQoL-5D (EQ-5D (3L)). Propensity score matching was used to compare health utility of general population sample with that of prodromal DSP patients and mild DSP patients separately. Subjects were matched on their demographics and clinical characteristics. Results: A total of 10,080 HSE subjects (median age 43.0, 45.9% male) and 7,020 DSP patients (median age 78.0, 45.8% female) were collected, respectively. After matching on demographic and clinical characteristics, 461 pairs of patients were identified. DSP patients with mild AD had significantly worse EQ-5D (3L) scores (0.61 vs. 0.84; p< 0.001) compared to the general population sample. This difference exceeded the minimally important difference (MID) for the EQ-5D (3L). Prodromal DSP sample also had significantly worse EQ-5D (3L) scores (0.80 vs. 0.86; p< 0.001) compared to the general population (n= 321 matched pairs), but this difference did not exceed the MID. In both models, all covariates were adequately balanced between groups. ConClusions: Prodromal and mild AD patients in the DSP sample both suffered from worse QoL compared to a general population sample with similar demographic and clinical characteristics. This suggests that there is still an unmet need in the current disease management of AD.
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