The Development of a Digital Patient-Reported Outcome Measurement for Adults With Chronic Disease (The Parsley Symptom Index): Prospective Cohort Study.

Hants Williams,Sarah Steinberg,Robin Berzin

doi:10.2196/29122

Abstract

BackgroundThe monitoring and management of chronic illness has always been a challenge. Patient-reported outcome measures (PROMs) can be powerful tools for monitoring symptoms and guiding treatment of chronic diseases, but the available PROM tools are either too broad or too disease specific for the needs of a primary care practice focused on longitudinal care.ObjectiveIn this study we describe the development and preliminary validation of the Parsley Symptom Index (PSI).MethodsThis prospective cohort study took place from January 5, 2018, to June 05, 2020, among a sample of 4621 adult patients at Parsley Health. After a review of literature, followed by binning and winnowing of potential items, a 45-item PROM that also served as a review of systems (ROS) was developed. The PSI was deployed and completed by patients via an online portal. Construct and face validity was performed by clinicians, tested on patients, and feasibility was measured by response rate, completion rate, and percentage of missing data.ResultsThe response rate for 12,175 collected PSIs was 93.72% (4331/4621) with a 100% item completion rate. A confirmatory factor analysis confirmed the model structure was satisfactory by a Comparative Fit Index of 0.943, Tucker–Lewis index of 0.938, and root mean square error of approximation of 0.028.ConclusionsA 45-item ROS-style PROM designed to capture chronic disease symptoms was developed, and preliminary validation suggests that the PSI can be deployed, completed, and helpful to both patients and clinicians.

Highlights

Chronic disease is the primary cause of death and disability in the United States [1] and accounts for 90% of the nation’s US $3.5 trillion in annual health care costs [2]
The existing health care system was designed for acute illness and is poorly suited for chronic disease, which accounts for the majority of services provided [4]
We envision a new type of patient-reported outcome measure Patient-Reported Outcomes Measurement Inventory System (PROMIS) (PROM) that could function like a review of systems (ROS), feed into the collaborative patient–doctor conversation to promote personalized tailoring of care plans, while offering opportunities for more continuous engagement like a digital health tracker

Summary

Introduction

Chronic disease is the primary cause of death and disability in the United States [1] and accounts for 90% of the nation’s US $3.5 trillion in annual health care costs [2]. The existing health care system was designed for acute illness and is poorly suited for chronic disease, which accounts for the majority of services provided [4]. The massive increase in chronic disease is rapidly unmasking the gaps in our health care delivery system, in disease monitoring and management. The monitoring and management of chronic illness has always been a challenge. Patient-reported outcome measures (PROMs) can be powerful tools for monitoring symptoms and guiding treatment of chronic diseases, but the available PROM tools are either too broad or too disease specific for the needs of a primary care practice focused on longitudinal care

Methods

Results

Conclusion