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Table 2 Overview of measurement instruments

From: Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries

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 ( 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
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
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
Proposal made by consortium
Timing of admission, place of death, socio-demographics, socio-economic status, religion/ethnicity Deceased resident Key person management
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