Can patients reliably report quality indicators and disease phenotype? Results from the CrohnsPROMISE trial.

Abstract

Purpose: There is high administrative burden associated with capturing qualityindicators in routine clinical practice. The purpose of this study is to assess thefeasibility and accuracy of utilizing patient reported outcomes (PRO) for determiningquality indicators in Crohn's disease (CD) patients. Methods and Description: CrohnsPROMISE is designed as a pilot two-armed, prospective, randomized clinical trial aimed at determining whether web-basedreporting of PRO and quality indicators will impact clinical outcomes for patientswith CD. CD patients are requested to enter information about disease summaryand quality indicators at crohnspromise.org. This information is then compared tophysician documentation and results in electronic health records (EHR) to determineconcordance rates for different patient reported variables, quality indicators, CD disease phenotype and medication use. Results: A total of 126 patients were given access to enter data prospectively atcrohnspromise.org, and, of these, 122 patients (97%) were able to enter data ontheir own. Tables 1 and 2 show the concordance rates between PRO and physician/EHR documentation. Conclusions: The majority of the CD patients can independently report PROusing a web based tool. Information on many quality indicators (including colonoscopy, findings of dysplasia or cancer, smoking, adherence and medication use)can be accurately captured from patients. There is high variability in patient (Table Presented) reported and physician assessed CD phenotype, bone mineral density qualitymeasures and steroid use that could reflect deficits in patients' knowledge, physiciandocumentation or both. These deficits need to be addressed as we start toleverage PRO for quality improvement efforts in routine clinical practice.