Linked Patient-Reported Outcomes Data From Patients With Multiple Sclerosis Recruited on an Open Internet Platform to Health Care Claims Databases Identifies a Representative Population for Real-Life Data Analysis in Multiple Sclerosis

Abstract

Background: An enormous amount of information relevant to public health is being generated directly by online communities.

Objective: To 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.

Methods: US 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.

Results: The 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.

Conclusions: Linking 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.

Keywords: Internet; linkage analysis; multiple sclerosis; outcomes assessment.

Figure 1

Survey and linkage analysis process. MS: multiple sclerosis.

Figure 2

Overview of the data available in the different sources included in the linkage analysis. The cohorts identified in the medical claims (Dx) and prescription claims (Rx) databases were merged for the linkage analysis. *Via International Classification of Diseases, Ninth Revision, codes. **All claims may not have been captured owing to the possibility of patients using providers or pharmacies not in the database. PMTX+: PharMetrics Plus; QoL: quality of life.

Figure 3

Flow of respondents.

Figure 4

Frequencies of the most common multiple sclerosis (MS) symptoms based on International Classification of Diseases codes on paid claims in the cohort linked to the PharMetrics Plus MS database (blue bars) and the overall PharMetrics Plus MS population (red bars). Only symptoms with prevalence >10% are shown. Asterisk indicates P<.05.

Figure 5

Use of multiple sclerosis (MS)–specific medication in the 1-year index period in the overall PharMetrics Plus MS cohort (red bars) and in the cohorts linked to the PharMetrics Plus MS (light blue bars) and Rx/Dx (dark blue bars) databases. DMT: disease-modifying therapy; Rx/Dx: merged prescription claims (Rx) and medical claims (Dx) database.