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Excess Mortality in Long-Term Care Residents With and Without Personal Contact With Family or Friends During the COVID-19 Pandemic

  • Rachel D. Savage
    Affiliations
    Women's Age Lab and Women's College Research Institute, Women's College Hospital, Toronto, Ontario, Canada
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
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  • Paula A. Rochon
    Affiliations
    Women's Age Lab and Women's College Research Institute, Women's College Hospital, Toronto, Ontario, Canada
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
    Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
    Division of Geriatric Medicine, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
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  • Yingbo Na
    Affiliations
    Women's Age Lab and Women's College Research Institute, Women's College Hospital, Toronto, Ontario, Canada
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
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  • Rachel Strauss
    Affiliations
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
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  • Kevin A. Brown
    Affiliations
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
    Public Health Ontario, Toronto, Ontario, Canada
    Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
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  • Andrew P. Costa
    Affiliations
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
    Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada
    Centre for Integrated Care, St Joseph's Health System, Hamilton, Ontario, Canada
    Department of Medicine, Michael G. DeGroote School of Medicine, McMaster University, Hamilton, Ontario, Canada
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  • Sudeep Gill
    Affiliations
    Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, Canada
    Department of Medicine, Queen's University, Kingston, Ontario, Canada
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  • Jennie Johnstone
    Affiliations
    Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
    Infection Prevention and Control, Sinai Health, Toronto, Ontario, Canada
    Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, Ontario, Canada
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  • Peter Tanuseputro
    Affiliations
    Department of Medicine, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada
    Bruyère Research Institute, Ottawa, Ontario, Canada
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  • Nathan M. Stall
    Affiliations
    Women's Age Lab and Women's College Research Institute, Women's College Hospital, Toronto, Ontario, Canada
    Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
    Division of Geriatric Medicine, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
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  • Pat Armstrong
    Affiliations
    Department of Sociology, York University, Toronto, Ontario, Canada
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Published:December 17, 2021DOI:https://doi.org/10.1016/j.jamda.2021.12.015
      Despite evidence of disparities in excess mortality during the COVID-19 pandemic,
      • Rossen L.M.
      • Ahmad F.B.
      • Anderson R.N.
      • et al.
      Disparities in excess mortality associated with COVID-19 - United States, 2020.
      less is known about the unequal impacts within long-term care (LTC).
      • Gorges R.J.
      • Konetzka R.T.
      Factors associated with racial differences in deaths among nursing home residents with COVID-19 infection in the US.
      Even prepandemic, many residents experienced loneliness and social isolation.
      • Victor C.R.
      Loneliness in care homes: a neglected area of research?.
      The most isolated—those without living family or friends, or who are geographically distant or estranged from them
      • Chamberlain S.A.
      • Duggleby W.
      • Teaster P.B.
      • et al.
      Characteristics of socially isolated residents in long-term care: a retrospective cohort study.
      —often receive increased care and support from LTC staff.
      • Chamberlain S.A.
      • Duggleby W.
      • Teaster P.B.
      • et al.
      Challenges in caring for unbefriended residents in long-term care homes: a qualitative study.
      With the demands of COVID-19, these efforts may not have been possible to sustain. This may have led already socially vulnerable residents to be disproportionately affected by COVID-19, especially without family and friends to advocate for needed care or provide emotional support. Our objective was to compare excess mortality early in the COVID-19 pandemic in LTC residents with and without personal contact with family or friends.

      Methods

      We conducted an interrupted time series analysis to evaluate changes in all-cause mortality rates of LTC residents with and without contact with family or friends in Ontario, Canada, from January 1, 2017, to September 30, 2020. Residents were identified using the Continuing Care Reporting System database. Although pandemic-related restrictions in LTC (eg, visitor bans, suspension of congregate dining) led to widespread social isolation of residents, most remained in contact with family and friends virtually or by phone. We defined residents as having no personal contact (including phone calls) with family and friends in the past 7 days if the assessor indicated “yes” to item F2E (absence of personal contact with family or friends), based on their most recent annual assessment from the Resident Assessment Instrument Minimum Dataset (version 2.0).
      • Mor V.
      A comprehensive clinical assessment tool to inform policy and practice: applications of the minimum data set.
      Item F2E is a reliable measure of family or friend contact. We found 93.5% agreement across annual assessments over a 5-year lookback window and 95.8% agreement between the last 2 assessments (Supplementary Table 1), with a prevalence- and bias-adjusted Kappa coefficient of 0.92 (95% CI 0.91, 0.92) (Supplementary Table 2). Deaths were ascertained using Ontario's Registered Persons Database and other health administrative databases. These datasets were linked using unique encoded identifiers and analyzed at ICES.
      We used March 14, 2020, when restrictions were implemented as an infection prevention and control intervention in Ontario as COVID-19 began to spread in the community, to define the prepandemic and pandemic periods. Segmented regression models with autocorrelated errors were fitted for each resident group to evaluate changes in mortality rates. Models included time in months (prepandemic trend), intervention period (prepandemic vs pandemic, representing the change in rates just after March 14, 2020), an interaction between the intervention period and time (pandemic trend, representing time elapsed since March 14), and season (October-March, April-September) as explanatory variables.
      Excess mortality in the pandemic period was calculated in each group as absolute and relative differences in observed and expected mortality, based on pre-COVID-19 trends. We calculated the difference in excess mortality in residents with and without family or friend contact using a difference-in-differences analysis. Resident characteristics were compared using standardized differences (SD); differences >0.10 were considered meaningful.
      • Austin P.C.
      Using the standardized difference to compare the prevalence of a binary variable between two groups in observational research.
      Data use was authorized under section 45 of Ontario's Personal Health Information Protection Act and did not require ethics review.

      Results

      As of March 14, 2020, 2.3% (1550/67,589) of residents had no personal contact with family or friends (mean and range across study: 2.9%, 2.3%-5.9%). These residents were younger [mean (standard deviation): 81.9 (9.2) years vs 85.4 (8.3), SD = 0.40], less often women (63.0% vs 70.4%, SD = 0.16), and had fewer comorbid conditions [3.6 (1.9) vs 4.0 (1.9), SD = 0.20], but were similar to residents with family or friend contact in physical function [activities of daily living score, 17.0 (7.0) vs 17.6 (6.7), SD = 0.09] and dementia prevalence (75.2% vs 72.5%, SD = 0.06).
      During the pandemic period, there was a 57.8% relative increase (absolute change, 12.6 excess deaths per 1000) in mortality in residents without family or friend contact and a 17.1% increase (4.8 deaths per 1000) in residents with family or friend contact, representing 34.8% greater excess mortality in residents without personal contact with family or friends (difference-in-difference, 7.8 deaths per 1000) (Table 1). Patterns were consistent across sexes and in residents ≥85 years (data not shown). Excess mortality was highest in April, returning to pre–COVID-19 levels by June-July when community transmission was low. Overall, 9.5% (54/567) of deaths in residents without family or friend contact occurred in those with confirmed COVID-19 compared with 13.4% (1788/13,337) of deaths in residents with family or friend contact. Residents without family or friend contact had lower hospital transfer rates prior to death in April and May despite similar rates in March (data not shown).
      Table 1Observed, Expected, and Excess Mortality Rates in Long-Term Care (LTC) Residents by Family or Friend Contact Status, During the Pandemic Period of March 14 to September 30, 2020
      MonthResidents With Personal Contact With Family or Friends
      As of March 1, 2020, a total of 77,291 residents lived in Ontario's 623 licensed LTC homes, where they received personal and nursing care, subsidized accommodations, and prescription medications through a publicly funded program. At the start of the pandemic period (March 14, 2020), 67,589 Ontario nursing home residents were alive and had an annual Resident Assessment Instrument Minimum Dataset (RAI-MDS) assessment—66,039 had personal contact with family and friends and 1550 had no contact.
      Residents Without Personal Contact With Family or Friends
      As of March 1, 2020, a total of 77,291 residents lived in Ontario's 623 licensed LTC homes, where they received personal and nursing care, subsidized accommodations, and prescription medications through a publicly funded program. At the start of the pandemic period (March 14, 2020), 67,589 Ontario nursing home residents were alive and had an annual Resident Assessment Instrument Minimum Dataset (RAI-MDS) assessment—66,039 had personal contact with family and friends and 1550 had no contact.
      Difference-in-Differences
      Rate/1000 ResidentsExcess MortalityRate/1000 ResidentsExcess Mortality
      ObservedExpected
      Expected mortality rates were estimated based on pre-COVID period (January 1, 2017–March 13, 2020) trends using segmented regression models with autocorrelated errors and seasonality adjustment.
      Absolute Rate Difference (95% CI)ObservedExpected
      Expected mortality rates were estimated based on pre-COVID period (January 1, 2017–March 13, 2020) trends using segmented regression models with autocorrelated errors and seasonality adjustment.
      Absolute Rate Difference (95% CI)
      Overall32.828.04.8 (4.0, 5.6)
      Relative percentage change, calculated as (observed – expected)/expected, of 17.1% (95% CI 14.1, 20.1).
      34.321.812.6 (8.9, 16.2)
      Relative percentage change of 57.8% (95% CI 36.8, 78.8).
      7.8 (4.1, 11.5)
      Relative difference-in-difference, calculated as [(34.3/21.8)/(32.8/28.0)], of 34.8%.
      March38.533.35.2 (2.3, 8.1)50.325.724.7 (5.2, 44.1)19.4 (−0.2, 39.1)
      April48.228.220.0 (17.0, 23.0)55.123.531.6 (13.6, 49.5)11.5 (−6.7, 29.8)
      May32.426.85.6 (2.9, 8.3)38.119.918.2 (3.8, 32.6)12.5 (−2.1, 27.2)
      June26.126.10.0 (−2.5, 2.6)34.921.513.3 (0.1, 26.6)13.3 (−0.2, 26.8)
      July26.127.1−1.0 (−3.6, 1.7)27.322.35.0 (−6.7, 16.6)5.9 (−6.0, 17.8)
      August26.727.5−0.8 (−3.4, 1.9)24.320.53.8 (−6.5, 14.1)4.5 (−6.1, 15.2)
      September29.726.92.8 (0.1, 5.5)28.721.17.6 (−2.6, 17.9)4.8 (−5.8, 15.4)
      As of March 1, 2020, a total of 77,291 residents lived in Ontario's 623 licensed LTC homes, where they received personal and nursing care, subsidized accommodations, and prescription medications through a publicly funded program. At the start of the pandemic period (March 14, 2020), 67,589 Ontario nursing home residents were alive and had an annual Resident Assessment Instrument Minimum Dataset (RAI-MDS) assessment—66,039 had personal contact with family and friends and 1550 had no contact.
      Expected mortality rates were estimated based on pre-COVID period (January 1, 2017–March 13, 2020) trends using segmented regression models with autocorrelated errors and seasonality adjustment.
      Relative percentage change, calculated as (observed – expected)/expected, of 17.1% (95% CI 14.1, 20.1).
      § Relative percentage change of 57.8% (95% CI 36.8, 78.8).
      ǁ Relative difference-in-difference, calculated as [(34.3/21.8)/(32.8/28.0)], of 34.8%.

      Discussion

      LTC residents without personal contact with family or friends experienced 35% greater excess mortality early in the COVID-19 pandemic relative to residents who had personal contact with family or friends. These residents may have experienced reduced access
      • Brown K.A.
      • Daneman N.
      • Buchan S.A.
      • et al.
      Variation in care of community and nursing home residents who died of COVID-19 in Ontario, Canada.
      and/or other deficiencies in care (eg, delayed treatment decisions)
      • Cohen A.B.
      • Benjamin A.Z.
      • Fried T.R.
      End-of-life decision making and treatment for patients with professional guardians.
      if stripped of the extra care typically provided by staff, and with no family or friends to advocate for needed care. They may have also been less resilient to pandemic-related stressors because of their isolation; loneliness and social isolation have been shown to increase the risk for premature mortality.
      • Holt-Lunstad J.
      • Smith T.B.
      • Baker M.
      • et al.
      Loneliness and social isolation as risk factors for mortality: a meta-analytic review.
      Although our findings were consistent across sex and age strata and residents without family or friend contact were younger and generally healthier, unmeasured factors may be driving observed differences. Further research is needed to understand underlying mechanisms to minimize further harm to socially vulnerable residents.

      Acknowledgment

      The authors thank Stephanie Chamberlain, PhD, University of Alberta, for her insight on measuring isolation among residents in Canadian long-term care homes.

      Appendix

      Supplementary Table 1Measurement of Within-Individual Reliability of Item F2E Over Repeated Annual Assessments Based on Both a 5-Year Lookback Window and the Last 2 Assessments
      Last Assessment Year
      The year in which the residents' last (or most recent) annual assessment was completed. A 5-year lookback window from the last assessment year was used to calculate percentage agreement among all completed annual assessments.
      Assessments Looking Back 5 yLast 2 Assessments
      nPercentage AgreementnPercentage Agreement
      201727,04494.820,35697.3
      201827,16295.320,21597.7
      201936,57395.527,34997.8
      202074,59891.462,62393.7
      Overall165,37793.5130,54395.8
      The year in which the residents' last (or most recent) annual assessment was completed. A 5-year lookback window from the last assessment year was used to calculate percentage agreement among all completed annual assessments.
      Supplementary Table 2Prevalence- and Bias-Adjusted Kappa Coefficient Based on the Last 2 Annual Assessments of Item F2E, Over the Study Period
      Last Assessment Year
      The year in which the residents' last (or most recent) annual assessment was completed.
      Kappa (95% CI)
      20170.95 (0.94, 0.95)
      20180.95 (0.95, 0.96)
      20190.96 (0.95, 0.96)
      20200.87 (0.87, 0.88)
      Overall0.92 (0.91, 0.92)
      The year in which the residents' last (or most recent) annual assessment was completed.

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