Assessing the concurrent validity of days alive and at home metric

Abstract

Background: Most patients living with serious illness value spending time at home. Emerging data suggest that days alive and at home (DAH) may be a useful metric, however more research is needed. We aimed to assess the concurrent validity of DAH with respect to clinically significant changes in patient-and caregiver-reported outcomes (PROs). Methods:We drew data from a study that compared two models of home-based palliative care among seriously ill patients and their caregivers in two Kaiser Permanente regions (Southern California and Northwest). We included participants aged 18 years or older (n = 3533) and corresponding caregivers (n = 463). We categorized patients and caregivers into three groups based on whether symptom burden (Edmonton Symptom Assessment System, ESAS) or caregiving preparedness (Preparedness for Caregiving Scale, CPS) showed improvements, deterioration, or no change from baseline to 1 month later. We measured DAH across four time windows: 30, 60, 90, and 180 days, after admission to home palliative care.We used two-way ANOVA to compare DAH across the PRO groups.Results: Adjusted pairwise comparisons showed that DAH was highest for patients whose ESAS scores improved or did not change compared with those with worsening symptoms. Although the mean differences ranged from less than a day to about 3 weeks, none exceeded 0.3 standard deviations. ESAS change scores had weak negative correlations (r = À0.11 to À0.21) with DAH measures. CPS change scores also showed weak, positive correlations (r = 0.23-0.24) with DAH measures. Conclusion: DAH measures are associated, albeit weakly, with clinically important improvement or maintenance of patient symptom burden in a diverse, seriously ill population.

Assessing for disparities in days alive and at home in a palliative care population

“…This study is a secondary data analysis from the HomePal study, which enrolled patients receiving home-based palliative care from January 7, 2019-January 24, 2020. 3,6,7 We included patients from Kaiser Permanente Southern California, KPSC (n = 3170), who had both geocoded data and race/ethnicity. The KPSC Institutional Review Board approved the study.…”

“…DAH was calculated for four time-windows (30, 60, 90, and 180 days from HomePal admission), by subtracting days spent in facilities (planned and unplanned) and days deceased from the number of days in the given time window, as detailed elsewhere. 3 Date of death was obtained from a combination of administrative, state, and other government databases. Race/ethnicity was captured from administrative data, while SES was measured using the Neighborhood Deprivation Index (NDI).…”

“…Recent studies have shown that "days alive and at home" (DAH) 1 can potentially serve as a valid complement to conventional patient-reported measures of quality of life, 2,3 and two in particular established the concurrent validity of DAH with clinically significant changes in symptom burden and patient-reported measures of quality of life. 3,4 While it is known that patient-reported measures of symptom burden (PROMs) may vary by race/ ethnicity, 5,6 Ankuda et al justly point out that "researchers need to pay special attention to how race, ethnicity, and [neighborhood] socioeconomic context [SES] are associated with days at home to not risk deepening disparities". 2 The purpose of this study was to assess whether, and the degree to which, DAH may vary by race/ethnicity and SES, particularly in a seriously ill population receiving home-based palliative care.…”

One accurate measurement is worth 1000 expert opinions—Assessing quality care in assisted living

“…Increased home-time has also shown a modest association with improvement or maintenance of patient symptom burden in seriously ill populations. 9 Furthermore, the authors use Medicare data linked to the expansive Google review platform to skillfully marry the concepts of quality data collection with a measure of consumer evaluation (Google's 5-star system). Much like your favorite restaurant, ALs can be rated using Google's 5-star rating system.…”

“…Nevertheless, all things considered, it is an excellent aggregate measure of person‐centered quality that reflects what is important to older adults in AL, the freedom to live in their home in relatively stable health. Increased home‐time has also shown a modest association with improvement or maintenance of patient symptom burden in seriously ill populations 9 . Furthermore, the authors use Medicare data linked to the expansive Google review platform to skillfully marry the concepts of quality data collection with a measure of consumer evaluation (Google's 5‐star system).…”