Measuring goal-concordant care using electronic clinical notes

IMPORTANCE: Goal-concordant care (GCC) is recognized as the highest quality of care and most important outcome measure for serious illness research, yet practical methods for measuring it are lacking.

OBJECTIVE: To measure GCC using clinical notes in patients’ medical records.

DESIGN, SETTING, AND PARTICIPANTS: This longitudinal cohort study involved a retrospective medical record review in 3 urban hospitals in a single health system. Participants included adults with a hospital encounter of 3 or more days between April 1 and July 31, 2019, and 50% or higher predicted 6-month mortality risk. Data abstraction occurred from July 2021 through June 2022.

EXPOSURE: Acute care hospitalization and a 50% or higher predicted 6-month mortality risk.

MAIN OUTCOMES AND MEASURES: Pairs of clinicians independently reviewed clinical notes from admission through 6 months or death to classify the care received during each epoch between patients’ documented goals of care (GOC) discussions, into 1 of 4 categories: (1) comfort focused, (2) maintain or improve function, (3) life extension, or (4) unclear. The GOC discussions had been previously classified using the same 4 categories. The primary study outcome was GCC, defined as the alignment of classification of care received and GOC. Secondary outcomes included goal-discordant care, if GOC and care-received classifications were misaligned, and uncertain concordance, if either care received or GOC was classified as unclear or GOC were not documented. Interrater reliability for classification of care received was assessed using Cohen κ statistics.

RESULTS: Among 109 patients (53 female [49%]), the median (IQR) age was 70 (63-79) years. The most common serious illnesses were cardiac disease (76 patients [70%]), metastatic cancer (50 patients [45%]), and chronic kidney disease (42 patients [39%]). Interrater reliability for care-received classification was almost perfect (95% interrater agreement, Cohen κ = 0.92; 95% CI, 0.86-0.99). A total of 398 epochs of care were identified, 198 (50%) of which were classified as goal concordant. Of the remaining 200 epochs, 74 (19%) were classified as goal discordant and 126 (32%) of uncertain concordance. During at least 1 epoch of care over the 6-month follow-up, 85 patients (78%) received care of uncertain concordance and 43 (39%) received goal-discordant care.

CONCLUSIONS AND RELEVANCE: In this cohort study of seriously ill adults, GCC was measured using clinical notes alone. These findings can inform automated text-based classification methods to improve the efficiency and scalability of this method and facilitate pragmatic and reliable measurement of GCC in serious illness research and quality improvement efforts.

National Heart, Lung, and Blood Institute

Catherine L Auriemma, Anne Song, Lake Walsh, Jason Han, Sophia Yapalater, Alexander Bain, Lindsay Haines, Stefania Scott, Casey Whitman, Stephanie P Taylor, Gary E Weissman, Matthew J Gonzales, Roshanthi Weerasinghe, Staci J Wendt, Katherine R Courtright