Table 3.

Study outcome measures

Carer
Stress and wellbeing Kessler Distress Scale (KD10) [24]	10-item scale, validated and widely used screening tool for psychological distress. It is discriminative in detecting "caseness" for DSM-IV disorders
Health Status (EQ-5D) [25].	Standardised, short, 5-item scale instrument for health and quality of life
Decision-making process Decision Satisfaction Inventory [26]	Validated measure with three sub-scales measuring overall satisfaction with medical care, satisfaction with the decision making process, and satisfaction with the decisions made
Satisfaction with decision-making process-Decision Conflicts Scale	Validated, 16-item scale measures uncertainly and difficulties in the decision making process [27].
Satisfaction with care Satisfaction with End of Life Care in Advanced Dementia Scale [28]	Specifically developed for use in advanced/end stage dementia. Three separate domains of measurement; satisfaction with the terminal care, symptom management, comfort during the last 7 days of life. Only to be completed after the patient has died.
Visual analogue scales	A standard 10 cm visual analogue scale to measure carers satisfaction with: 1) the process of the advanced care planning 2) the utility/usefulness of the advance care planning
Patient
Active interventions Painful Interventions Scale [29]	Measures invasive hospital procedures shown to be moderately to severely painful or uncomfortable including arterial blood gas testing, mechanical ventilation, naso-gastric feeding and bladder catheterisation
Other interventions	i.e. Resuscitation status, PEG feeding, prescription of neuroleptics
Quality of end of life care	Prescription of analgesia at time of death, use of Liverpool Care Pathway
Survival times	Time of intervention to time of death
System
Advanced care planning	Numbers choosing to make advanced care plan and adherence to advance care plan
Readmission rates	For emergency acute admissions
Place of death
Referrals	To community palliative care
Economic
Service use costs [30] Client Service Receipt Inventory (CSRI)	Baseline, 6 months and, if relevant, for the month prior to death