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Table 3 Data collection elements in the ZULIDAD study

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

Topic Instruments Source Time
RAD characteristics
 Demographics   REL BL
 Dementia   REL/RAI-MDS BL
 Health status   REL/PN/RAI-MDS BL/6M
 Quality of life QUALIDabcd, single item REL/PN BL/3M/PM
 Pain BISAD, single item PN BL/3M/PM
 Suffering MSSEa, single item PN BL/3M/PM
 Behavioral problems NPI-Q PN BL/3M/PM
 Survival time   REL/PN BL/3M
 Treatment strategy   PN BL/3M/PM
 Current treatments   PN BL/3M/PM
 Symptom Management EOLD-SMabc REL/PN BL/3M/PM
 Satisfaction with care EOLD-SWCabc, single item, open question REL BL/3M/PM
 Communication   REL/PN BL/3M/PM
 Trust in staff   REL BL/3M/PM
 Decisions DSIab REL 3M/PM
 Circumstances of dying   REL/PN PM
 Quality of dying EOLD-CADabcd, QOD-LTCa, QODD, FPCSa, single item REL/PN PM
Advanced planning issues
 Advanced directives   REL/PN BL/PM
 Presumed preferences PADDa REL BL
 Care agreements   PN BL/3M/PM
REL characteristics
 Demographics   REL BL
 Wellbeing WHO-5 REL BL/3M/PM
 Relation to RAD   REL BL/3M
 Knowledge   REL BL
 Attitudes   REL BL/3M/PM
PN characteristics
 Demographics   PN BL
 Wellbeing WHO-5 PN BL/3M/PM
 Work   PN BL/3M/PM
 Attitudes   PN BL/3M/PM
  1. Note. RAD Demographics = Sex, year of birth, religious affiliation, marital status. Dementia = Dementia type, Cognitive Performance Scale. Health status = Overall health status, changes in overall health status, RAI-MDS. Survival time = Estimated survival time, has dying phase started? Treatment strategy = palliative vs. curative. Current treatments = Medical treatments, safety-related measures, psychosocial interventions. Communication = Frequency of and satisfaction with staff/REL communication. Trust in staff = Trust in nursing staff. Decisions = Satisfaction with decisions (DSI), discussions about interventions and whether they lead to decisions. Circumstances of Dying = Cause of death, place of death, attendees, subjective estimation of global dying quality. Quality of dying = REL: EOLD-CAD, QOD-LTC, FPCS; PN: EOLD-CAD. Advanced directives = Availability, content, were directives adhered to? Care agreements = Regarding medical treatments and safety-related measures. Demographics REL = Sex, year of birth, nationality, religious affiliation, education. Wellbeing REL = Health status, wellbeing (WHO-5), quality of life, emotional burden, feelings of guilt. Relation to RAD = relationship quality before dementia and after dementia, frequency and duration of visits. Knowledge = Knowledge of dementia, palliative care and new legislation. Attitudes = Attitudes towards means of ending or prolonging life. Demographics PN = Sex, year of birth. Wellbeing PN = Health status, wellbeing (WHO-5), quality of life. Work = Work satisfaction, work load, work experiences, qualification
  2. Abbreviations: RAD resident with advanced dementia, RAI-MDS resident assessment instrument – minimum data set, REL relative, BL baseline questionnaire, 3 M three-monthly questionnaire, 6 M six-monthly RAI-MDS, PM post mortem questionnaire, QUALID quality of life in late-stage dementia scale [24], BISAD Observational instrument to assess pain in dementia [23], MSSE mini suffering state examination [22], EOLD-SM/ -SWC/ -CAD end-of-life care in dementia – symptom management/ -satisfaction with care/ -comfort assessment in dying [21], QOD-LTC quality of dying in long-term care [38], PADD preferences about dying and death [39], QODD quality of dying and death (corresponds with PADD) [40], FPCS family perception of care scale [41], DSI decision satisfaction inventory [33], WHO-5 the WHO-five well-being index [42]
  3. anewly translated into German, bapplied in CASCADE study, capplied in DEOLD study, dapplied in the “Dying Well” study