Predicting death in home care users: derivation and validation of the Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool (RESPECT)

BACKGROUND:Prognostication tools that report personalized mortality risk and survival could improve discussions about end-of-life and advance care planning. We sought to develop and validate a mortality risk model for older adults with diverse care needs in home care using self-reportable information — the Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool (RESPECT).METHODS:Using a derivation cohort that comprised adults living in Ontario, Canada, aged 50 years and older with at least 1 Resident Assessment Instrument for Home Care (RAI-HC) record between Jan. 1, 2007, and Dec. 31, 2012, we developed a mortality risk model. The primary outcome was mortality 6 months after a RAI-HC assessment. We used proportional hazards regression with robust standard errors to account for clustering by the individual. We validated this algorithm for a second cohort of users of home care who were assessed between Jan. 1 and Dec. 31, 2013. We used Kaplan–Meier survival curves to estimate the observed risk of death at 6 months for assessment of calibration and median survival. We constructed 61 risk groups based on incremental increases in the estimated median survival of about 3 weeks among adults at high risk and 3 months among adults at lower risk.RESULTS:The derivation and validation cohorts included 435 009 and 139 388 adults, respectively. We identified a total of 122 823 deaths within 6 months of a RAI-HC assessment in the derivation cohort. The mean predicted 6-month mortality risk was 10.8% (95% confidence interval CI] 10.7%–10.8%) and ranged from 1.54% (95% CI 1.53%–1.54%) in the lowest to 98.1% (95% CI 98.1%–98.2%) in the highest risk group. Estimated median survival spanned from 28 days (11 to 84 d at the 25th and 75th percentiles) in the highest risk group to over 8 years (1925 to 3420 d) in the lowest risk group. The algorithm had a c-statistic of 0.753 (95% CI 0.750–0.756) in our validation cohort.INTERPRETATION:The RESPECT mortality risk prediction tool that makes use of readily available information can improve the identification of palliative and end-of-life care needs in a diverse older adult population receiving home care.

Most people in high-income countries die of causes with progressive, predictable trajectories of decline.^1–4 Since 2000, the 3 leading causes of death in Canada — accounting for 55% of all deaths — have been cancer, heart disease and stroke.¹ Other leading causes of death, such as dementia and chronic lower respiratory diseases, also share signs and symptoms of senescence that are common across chronic diseases, including deterioration of physical and cognitive function, as well as an increased need for assistance.Despite the predictable nature of most deaths, many Canadian residents who are at the end of life do not receive adequate home-based supports.⁵ In Ontario — the largest province in Canada with more than 14 million residents and the setting of this study — only 40% of decedents receive formal home care, and less than 20% receive a physician home visit in their last year of life.^6,7 Even among those who had received palliative and end-of-life care, the start of service was often too close to death and failed to have a positive impact on the quality of life in those last months.⁸ The lack of available and accurate prognostic information is a key challenge. There are few existing tools that can be used to inform palliative care planning for the general population of older adults who live in the community and in people without cancer.⁹ Other barriers to accurate prognostic estimates include clinicians’ reluctance or lack of time and existing prognostication tools’ reliance on complex or specialized inputs, such as laboratory data and previous health care use. As a result, many older and frail adults do not receive timely palliative care and do not have an advance care plan.^6,10–13Our primary objective was to develop and validate a model for predicting mortality risk among the general population of community-dwelling adults with and without cancer that spans an actionable period for end-of-life planning (5 yr to imminent death). The variables included in our prognostication model — the Risk Evaluation for Support: Predictions for Elder-life in the Community Tool (RESPECT) — were prespecified to include exposures that could be self-reported by patients and their caregivers, including family members.