Quality of Life Trajectories With Integration Into Electronic Health Records for High-Resolution Patient Outcomes: Algorithm Development and Validation Study

TL;DR

This study shows that integrating frequent quality of life assessments into electronic health records is technically and clinically feasible, offering new insights into patient outcomes.

Contribution

The study demonstrates the feasibility of high-resolution quality of life tracking integrated into EHRs for personalized care.

Findings

HRQoL assessments showed clinically relevant results across four medical domains.

Significant correlations were found between HRQoL and other clinical metrics like pain levels and global health status.

High-resolution QoL data revealed considerable variability in patient outcomes over time.

Abstract

Patient-reported outcome measures (PROMs) such as health-related quality of life (HRQoL) are usually assessed at greater time intervals such as diagnostic time points, after treatment, and during follow-up. Many PROMs require frequent data collection (weekly or daily). Electronic PROMs enable high-resolution tracking but face declining response rates. Integrating PROMs into electronic health records (EHRs) could improve response rates and personalize therapy.

This study aimed to evaluate the technical and clinical feasibility of high-frequency HRQoL assessments for routine care in EHRs.

Patients receive emails on their mobile devices with 1-time links to a web-based app called MyEDC. This app communicates with an electronic data capture proxy in the demilitarized zone of the hospital. With a polling mechanism, these patient data are transferred to the protected hospital network and uploaded to the EHR system. HRQoL on a visual analog scale is assessed over the course of treatment in 4 clinical use cases: psychosomatics, hematology, visceral surgery, and neurosurgery.

Quality of life (QoL) trajectories were collected for 110 patients with daily or weekly data collection between 2 weeks and 3 months. The HRQoL analyses revealed clinically relevant findings across the 4 different medical domains. In the use case psychosomatics, 36 patients showed a significant increase in HRQoL following 4 weeks of therapy, rising from a median of 42% (IQR 32%-52%) to 60% (IQR 41%-67%; P=.01). An analysis of 25 patients in hematology demonstrated a significant correlation between HRQoL and 30-item QoL Questionnaire (EORTC QLQ-C30) global health status score (P=.02). For 26 patients in visceral surgery, a significant association was observed between HRQoL and the reported pain level (P<.001). The clinical feasibility was further highlighted in the neurosurgery use case, where 23 patients showed a median response time to the electronic PROM questionnaires of 5.3 (IQR 0.6-17.7) hours. HRQoL values were associated with disease-specific symptoms and scores, indicating clinical validity of this readout. Considerable variability of HRQoL was observed over time, both intraindividually and interindividually. Median area under the curve of HRQoL ranged from 0.46 to 0.79. Median time to answer ranged from 0.9 to 7.1 hours. No significant association between number of responses and age was observed.

High-resolution QoL trajectories with EHR integration are technically and clinically feasible. They offer a novel readout beyond survival analysis or PROM end point, enabling precise disease characterization and treatment comparison.

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