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Table 1 Main characteristics of the four published prospective cohort studies on institutional end-of-life care in dementia

From: The last phase of life with dementia in Swiss nursing homes: the study protocol of the longitudinal and prospective ZULIDAD study

Study Sample Data sources Main outcome measures Main study aims
CareAD [2527] N = 123 (91 cases of death), census in 3 NH, main inclusion criteria: life expectancy of 6 month or less, dementia diagnosis, receiving or meeting criteria for hospice or palliative care Chart review (BL, 3 M, PM); surrogate decision-makers (BL, 3 M, PM); physicians (BL); nurses (BL, incomplete information); direct assessment of residents (BL, 3 M) Medical status (by charts); treatment decisions (by surrogates); quality of life (by caregivers and surrogates); frequency of contact with staff (by surrogates); spiritual and religious beliefs (by surrogates) Description of health problems, examination of decisions of surrogate decision-makers regarding treatment
CASCADE [5, 16] N = 323 (177 cases of death), main inclusion criteria: CPS 5 or 6, dementia diagnosis, GDS = 7 Chart review, nurses and clinical examination (BL, 3 M, PM2, PM7); REL (BL, PM2, PM7) EOLD-SM (by nurses); EOLD-CAD (by nurses); EOLD-SWC (by REL); QUALID (by nurses); DSI (by REL) Description of disease trajectories, resident comfort, clinical decision-making, family satisfaction with care, complicated grief among REL
DEOLD [17, 28] N = 372 (218 cases of death), main inclusion criteria: CPS 5 or 6, GDS = 7 Physician (BL, 6 M, PM), REL (BL, 6 M, PM) EOLD Scales, PAINAD, QUALID (by physicians and REL) Description of comfort, symptom burden, pain and family satisfaction with care
EoLO-PSODEC [29, 30] N = 315 (NH), N = 181 (home care) (100 cases of death), main inclusion criteria: FAST ≥ =7, life expectancy of more than two weeks Chart review (bi-weekly), nurses (bi-weekly), physicians (incomplete information) Diagnosis, ongoing treatment, current prescriptions, appropriateness of prescription (by charts), DS-DAT (by nurses) Description of treatment and prescription, discomfort, critical decisions
  1. Note. Abbreviations: NH nursing home, REL relatives, BL baseline, 3 M three-monthly, 6 M biannually, PM post mortem, PM2 post mortem after two weeks, PM7 post-mortem after 7 weeks, CPS cognitive performance score [15, 31], GDS global deterioration scale [32], EOLD-SM/ -SWC/ -CAD end-of-life in dementia - symptom management/ -satisfaction with care/-comfort at dying [21], QUALID quality of life in late-stage dementia scale [24], DSI decision satisfaction inventory [33], PAINAD pain assessment in advanced dementia [34], FAST functional assessment staging [35], DS-DAT discomfort scale for dementia of the alzheimer’s type [36]