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Table 1 Baseline characteristics of the studies included

From: Hospitalization at the end of life among nursing home residents with dementia: a systematic review

First author, year Country Data source Year of data Sample (with dementia) Inclusion/ exclusion criteria How was dementia assessed? Mean age at death
(% females)
Aaltonen,
2014 [33]
Finland Nationwide registry data (Care register for health care and Care register for social care)
Causes of Death Register
2002–2008 13,159a NHR Died at 70 years or older
In NH during their last months of life (in care both 6 months and 3 months before death, stayed there for ≥90 days during the last 6 months of life)
Any cause of death (immediate, underlying, intermediate, contributing) with ICD-10 codes: F00, F01, F02, F03, G30 87 years (76%)
Agar,
2017 [34]
Australia Face-to-face or telephone interviews
Nursing home and medical records
Questionnaires
2013–2014 64b NHR from 10 NH Nursing homes with ≥50% of residents with dementia providing intensive levels of care
Residents with advanced dementia
Medical records, FAST, AKPS
Advanced dementia:
- documented diagnosis of dementia
- and FAST (≥6a, stable for 1 month)
- and AKPS ≤50
85.8 years (58%)
Allers, 2018 [13] Germany Health insurance claims data (DAK)
Long-term care insurance data
2010–2014 not reported ≥65 years old, newly admitted to a NH
Insured continuously for at least 365 days without NH placement before
ICD-10 codes in the quarter of NH admission: F00.x, F01.x, F02.0, F02.3, F03, G30.x, G31.0, G31.1, G31.82, G31.9, R54 not reported
Cai, 2016 [35] USA MDS 2.0
Medicare beneficiary summary file
Medicare claims
2007–2010 293,967 NHR ≥65 years old
In NH ≥90 days before death
Continuously enrolled in Medicare fee-for-service Plans
Medicare–Medicaid dually eligible during the last 30 days of life
CPS constructed of MDS 2.0 data
- mild cognitive impairment: CPS 0–2
- moderate cognitive impairment: CPS 3–4
- severe cognitive impairment: CPS 5–6
CPS 3–4:
85.9 years
(70.1%)c
CPS 5–6:
85.7 years
(76.3%)c
Gessert, 2008 [36] USA Administrative databases from Centers for Medicare and Medicaid services
MDS
2000–2001 3703 NHR Urban and rural NH
≥67 years old
Not enrolled in Health Maintenance Organization
No hospice benefits during 2 years prior to death
Not comatose
Severe and persistent cognitive impairment based on the CPS
- CPS = 6 on ≥2 consecutive MDS reports at least 60 days apart
- absence of MDS reports with CPS ≤4 there after
87.1 years
(76.4%)c
Hendriks, 2017 [20] Netherlands Questionnaires from the Dutch end-of-life in dementia study (DEOLD) 2007–2011 330 residents from 34 LTCF Residents admitted to psychogeriatric wards Known diagnosis of dementia upon nursing home admission (by a physician)
Advanced dementia: CPS 5–6 + GDS 7
85.2 years (not reported)
Houttekier, 2014 [21] Belgium Questionnaires (with access to medical files) from the “Dying well with Dementia” study 2010 195 NHR from 69 NH Inclusion process in two steps:
First: residents had to be completely care dependent for ADL and disoriented in time and space or had to have a Katz scale score ≥ 3
Second: Resident had to have dementia (reported by nurse or GP)
After inclusion CPS and GDS was assessed:
- mild/moderate: CPS < 5, GDS < 7
- severe: CPS ≥5 and GDS < 7 or CPS < 5 and GDS = 7
-very severe/ advanced: CPS ≥5, GDS = 7
< 85 years: 31.7%
85–90 years: 37.7%
> 90 years: 30.6%
(61.4%)
Krishnan, 2015 [37] Canada MDS 2.0
Medical charts
Death certificates
2010–2013 58 NHR from 1 NH All residents were included Dementia recorded on death certificate as underlying or immediate cause of death not reported
Lamberg, 2005 [30] USA MDS
Medical long-term care records
2001–2003 240 NHR from 1 NH Long term residents (stay ≥30 days)
Advanced dementia (CPS 5–6)
CPS 5–6
Long term care medical records to identify cause of cognitive impairment
92 years (median)
(75.8%)
Li, 2013 [22] USA MDS 2.0
Medicare beneficiary file
Hospice and hospital claims
2003–2007 143,980 NHRc ≥65 years old
> 3 months in nursing home
No rehabilitation or postacute stay
Not comatose
No transfers to another NH after last assessment
Not enrolled in managed care in last 30 days of life
Diagnosis of Alzheimer’s disease or other dementia on the last full MDS assessment 87.4 years
(71.9%)c
Livingston, 2013 [31] UK Care home resident records
Interviews
Questionnaires
  30 NHRd from 1 NH Living in the NH for at least 1 month before death
Resident records had to be available
Medical records
Diagnosis of dementia or suspected dementia (symptoms fulfilling standard dementia criteria)
not reported
Sloane, 2008 [15] USA (Telephone) interviews with staff and family
Study cohort from the Collaborative Studies of long-term care (CS-LTC)
2002–2005 247 NHR NHR who spent 15 out of 30 days in a NH
Died no more than 3 days after leaving the NH
NH staff members were asked whether the decedent was an Alzheimer’s type resident 3 months before death and if dementia was a contributing factor towards the resident’s death not reported
Temkin-Greener, 2013 [32] USA Nationwide administrative data from the chronic condition data warehouse
Medicare denominator files
MDS
2003–2007 384,355 NHR Died in NH or within 8 days of discharge to a different care setting
Not enrolled in managed care in last 30 days of life
Not from Virgin Islands or Puerto Rico
not reported not reported
  1. Proportions are reported with one decimal place (provided decimal places were given or could be calculated)
  2. Abbreviations: ADL Activities of daily living, AKPS Australia-modified Karnofsky Performance Status, CPS Cognitive Performance Scale ranging between 0 (intact cognitive performance) and 6 (very severely impaired), FAST Functional Assessment Staging Tool, GDS Global Deterioration Scale ranging from 1 (no cognitive decline) to 7 (very severe cognitive decline), LTCF Long-term care facility, MDS Minimum Data Set, NH Nursing home, NHR Nursing home residents
  3. aSample size given in this table does not represent the whole study population but only the number of nursing home residents reported
  4. bStudy design was an intervention study with a control group, the data reported in this table refers to the control group
  5. cNumbers refer to the latest year studied, which was 2007
  6. dNumbers refer to residents who died prior to the intervention