Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis.

ABSTRACT:

Introduction

Online communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS).

Methods

Unguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e.g., general/health social networking sites, patient-physician Q&A sites, AS forums). Using natural language processing combined with manual curation, patient-reported experiences within narratives were evaluated and categorized into social, physical, emotional, cognitive,

SUBMITTER: Sunkureddi P 

PROVIDER: S-EPMC5859700 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature