Linked Patient-Reported Outcomes Data From Patients With Multiple Sclerosis Recruited on an Open Internet Platform to...

Area of Science:

• Health Informatics
• Patient-Reported Outcomes
• Multiple Sclerosis Research

Background:

• Online communities generate vast public health information.
• Leveraging this data is crucial for understanding patient experiences.

Purpose of the Study:

• To assess the feasibility of linking patient-reported outcomes (PROs) from a US-based online survey of multiple sclerosis (MS) patients with health care utilization data from claims databases.
• To create a dataset for analyzing a broader MS population using pharmacy and medical claims.

Main Methods:

• Recruited US Facebook users with MS interest via targeted ads.
• Collected PROs via a web-based survey (demographics, disease characteristics, therapies, relapses, disability, quality of life, employment).
• Linked anonymous survey profiles to US medical and pharmacy claims data, assessing linkage rates and representativeness.

Main Results:

• Achieved a 67.6% linkage rate (440 of 651 completed surveys linked to claims data).
• No significant differences found in education, ethnicity, disease-modifying therapy (DMT) use, or recent relapses between linked and unlinked patients.
• Linked patients were slightly younger and less likely to be male compared to unlinked individuals; symptom frequencies were similar to the general MS population in claims databases.

Conclusions:

• Linking online PRO data with health care claims is a viable method for rapidly generating large, representative patient cohorts.
• This approach facilitates outcomes analysis in the multiple sclerosis population.
• The methodology supports efficient patient recruitment and data linkage for research.