Table 2 Overview of measurement instruments
Measurement | Unit of analysis | Respondent | Measurement instruments | |
|---|---|---|---|---|
Primary outcome at resident level | Quality of dying of the residents | Deceased resident | Staff | End-of-Life in Dementia Scales – Comfort Assessment while dying (EOLD-CAD) [23, 24] |
Primary outcome at staff level | Staff knowledge of palliative care | Staff | Staff | Palliative care survey (PCS) construct ‘Palliative care knowledge’ [22] |
Secondary outcomes | Staff self-efficacy (confidence) in communicating with residents at the end of life and their families | Staff | Staff | Self-Efficacy in End-of-Life Care Survey (S-EOLC) subscale ‘Communication’ [25] |
Staff self-perceived educational needs regarding patient and family communication and cultural and ethical values | Staff | Staff | End-of-Life Professional Caregiver Survey (EPCS), subscales ‘Patient and family communication’ and ‘cultural and ethical values’ [26] | |
Staff opinions on palliative care | Staff | Staff | Rotterdam Move2PC, 11 statements regarding opinions [27] | |
Quality of end-of-life care | Deceased resident | Staff | Quality of Dying in Long Term Care (QOD LTC) [28] | |
Economic outcomes | Resident’s health-related quality of life in last week of life in relation to direct cost of care (intervention and control) | Deceased resident | Staff | EuroQol EQ. 5D-5 L (http://www.euroqol.org/) End-of-Life in Dementia Scales – Comfort Assessment while dying (EOLD-CAD) [23, 24] Quality of Dying in Long Term Care (QOD LTC) [28] |
Other measures | Quality of end-of-life care according to the relatives | Deceased resident | Relative | End-of-Life in Dementia Scales – Satisfaction with Care (EOLD-SWC) [23, 24] |
Quality of communication between relatives and physicians | Deceased resident | Relative | Family Perception of Physician-Family Communication (FPPFC) [29] | |
Structural, facility level characteristics: | ||||
Facility status, type, case-mix, size, averaged length of stay, staffing and level of personnel | Facility | key person management | Proposal made by consortium | |
Palliative care policies of facility | Facility | key person management | Based on Belgian survey [8] | |
Structural quality indicators: Infrastructure, and access to palliative care | Facility | key person management | EU FP7 IMPACT Structural Quality Indicators for palliative care [30] | |
Clinical and background characteristics: | ||||
Comorbidities and cause of death | Deceased resident | Staff GP | Based on Belgian survey [8] | |
Functional and cognitive status | Deceased resident | Staff | Bedford Alzheimer Nursing Severity-Scale BANS-S [31] | |
Clinical judgements on dementia and stage of dementia | Deceased resident | GP Staff | Global Deterioration Scale stage 7 (GDS) [32] Cognitive Performance Scale (CPS) [33] | |
Age & gender of resident and relative, relationship to deceased | Deceased resident | Key person management Relative | Proposal made by consortium | |
Timing of admission, place of death, socio-demographics, socio-economic status, religion/ethnicity | Deceased resident | Key person management Relative | Proposal made by consortium | |
Age & gender of staff, experience, level of education, palliative care training | Staff | Staff | Proposal made by the consortium | |
Age & gender of GP, experience, palliative care training) | Deceased resident | GP | Proposal made by the consortium | |