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

Eicher, Stefanie; Theill, Nathan; Geschwindner, Heike; Moor, Caroline; Wettstein, Albert; Bieri-Brüning, Gabriela; Hock, Christoph; Martin, Mike; Wolf, Henrike; Riese, Florian

doi:10.1186/s12904-016-0151-2

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	QUALID^abcd, single item	REL/PN	BL/3M/PM
Pain	BISAD, single item	PN	BL/3M/PM
Suffering	MSSE^a, single item	PN	BL/3M/PM
Behavioral problems	NPI-Q	PN	BL/3M/PM
Survival time		REL/PN	BL/3M
Care
Treatment strategy		PN	BL/3M/PM
Current treatments		PN	BL/3M/PM
Symptom Management	EOLD-SM^abc	REL/PN	BL/3M/PM
Satisfaction with care	EOLD-SWC^abc, single item, open question	REL	BL/3M/PM
Communication		REL/PN	BL/3M/PM
Trust in staff		REL	BL/3M/PM
Decisions	DSI^ab	REL	3M/PM
Dying
Circumstances of dying		REL/PN	PM
Quality of dying	EOLD-CAD^abcd, QOD-LTC^a, QODD, FPCS^a, single item	REL/PN	PM
Advanced planning issues
Advanced directives		REL/PN	BL/PM
Presumed preferences	PADD^a	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

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
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]
^anewly translated into German, ^bapplied in CASCADE study, ^capplied in DEOLD study, ^dapplied in the “Dying Well” study

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ISSN: 1472-684X

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