Dataset Information

Fragmentation of care in the last year of life: Does dementia status matter?

ABSTRACT:

Background

Care at the end of life is commonly fragmented; however, little is known about commonly used measures of fragmentation of care in the last year of life (LYOL). We sought to understand differences in fragmentation of care by dementia status among seriously ill older adults in the LYOL.

Methods

We analyzed data from adults ≥65 years in the National Health and Aging Trends Study who died and had linked 2011-2017 Medicare fee-for-service claims for ≥12 months before death. We categorized older adults as having serious illness due to dementia (hereafter dementia), non-dementia serious illness or no serious illness. For outpatient fragmentation, we calculated the Bice-Boxerman continuity of care index (COC), which measures care concentration, and the known provider of care index (KPC), which measures the proportion of clinicians who were previously seen. For acute care fragmentation, we divided the number of hospitals and emergency departments visited by the total number of visits. We built separate multivariable quantile regression models for each measure of fragmentation.

Results

Of 1793 older adults, 42% had dementia, 53% non-dementia serious illness and 5% neither. Older adults with dementia had fewer hospitalizations than older adults with non-dementia serious illness but more than older adults without serious illness (mean 1.9 vs 2.3 vs 1, p = 0.002). In adjusted models, compared to older adults with non-dementia serious illness, those with dementia had significantly less fragmented care across all quantiles of COC (range 0.016-0.110) but a lower predicted 90th percentile of KPC, meaning more older adults with dementia had extremely fragmented care on the KPC measure. There was no significant difference in acute care fragmentation.

Conclusions

In the LYOL, older adults with dementia have fewer healthcare encounters and less fragmentation of care by the COC index than older adults with non-dementia serious illness.

SUBMITTER: Nothelle S

PROVIDER: S-EPMC9378534 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

Fragmentation of care in the last year of life: Does dementia status matter?

Nothelle Stephanie S Kelley Amy S AS Zhang Talan T Roth David L DL Wolff Jennifer L JL Boyd Cynthia C

Journal of the American Geriatrics Society 20220430 8

<h4>Background</h4>Care at the end of life is commonly fragmented; however, little is known about commonly used measures of fragmentation of care in the last year of life (LYOL). We sought to understand differences in fragmentation of care by dementia status among seriously ill older adults in the LYOL.<h4>Methods</h4>We analyzed data from adults ≥65 years in the National Health and Aging Trends Study who died and had linked 2011-2017 Medicare fee-for-service claims for ≥12 months before death. ...[more]

PMID: 35488709

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Project description:IntroductionThe last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap.Methods and analysisLYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers-Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40-60) will provide in-depth insight into reasons for transitions and effects on patients' quality of life. (4) Focus groups (n=3-5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life.Ethics and disseminationEthical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17-188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences.Trial registration numberThe study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).

Project description:Common diseases, particularly dementia, have large social costs for the U.S. population. However, less is known about the end-of-life costs of specific diseases and the associated financial risk for individual households.To examine social costs and financial risks faced by Medicare beneficiaries 5 years before death.Retrospective cohort.The HRS (Health and Retirement Study).Medicare fee-for-service beneficiaries, aged 70 years or older, who died between 2005 and 2010 (n = 1702), stratified into 4 groups: persons with a high probability of dementia or those who died because of heart disease, cancer, or other causes.Total social costs and their components, including Medicare, Medicaid, private insurance, out-of-pocket spending, and informal care, measured over the last 5 years of life; and out-of-pocket spending as a proportion of household wealth.Average total cost per decedent with dementia ($287 038) was significantly greater than that of those who died of heart disease ($175 136), cancer ($173 383), or other causes ($197 286) (P < 0.001). Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia ($61 522) was 81% higher than that for patients without dementia ($34 068); a similar pattern held for informal care. Out-of-pocket spending for the dementia group (median, $36 919) represented 32% of wealth measured 5 years before death compared with 11% for the nondementia group (P < 0.001). This proportion was greater for black persons (84%), persons with less than a high school education (48%), and unmarried or widowed women (58%).Imputed Medicaid, private insurance, and informal care costs.Health care expenditures among persons with dementia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk.National Institute on Aging.

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Project description:BackgroundFor many patients, health care needs increase toward the end of life, but little is known about the extent of outpatient physician care during that time. The objective of this study was to describe the volume and mix of outpatient physician care over the last 12 months of life among patients dying with different end-of-life trajectories.MethodsWe conducted a retrospective descriptive study involving adults (aged ≥ 18 yr) who died in Ontario between 2013 and 2017, using linked provincial health administrative databases. Decedents were grouped into 5 mutually exclusive end-of-life trajectories (terminal illness, organ failure, frailty, sudden death and other). Over the last 12 months and 3 months of life, we examined the number of physician encounters, the number of unique physician specialties involved per patient and specialty of physician, the number of unique physicians involved per patient, the 5 most frequent types of specialties involved and the number of encounters that took place in the home; these patterns were examined by trajectory.ResultsDecedents (n = 359 559) had a median age of 78 (interquartile range 66-86) years. The mean number of outpatient physician encounters over the last year of life was 16.8 (standard deviation [SD] 13.7), of which 9.0 (SD 9.2) encounters were with family physicians. The mean number of encounters ranged from 11.6 (SD 10.4) in the frailty trajectory to 24.2 (SD 15.0) in the terminal illness trajectory across 3.1 (SD 2.0) to 4.9 (SD 2.1) unique specialties, respectively. In the last 3 months of life, the mean number of physician encounters was 6.8 (SD 6.4); a mean of 4.1 (SD 5.4) of these were with family physicians.InterpretationMultiple physicians are involved in outpatient care in the last 12 months of life for all end-of-life trajectories, with family physicians as the predominant specialty. Those who plan health care models of the end of life should consider support for family physicians as coordinators of patient care.

Dataset Information

Fragmentation of care in the last year of life: Does dementia status matter?

Background

Methods

Results

Conclusions

Publications

Fragmentation of care in the last year of life: Does dementia status matter?

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