Table 3

Study outcome measures


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


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


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


To community palliative care


Service use costs [30]

Client Service Receipt Inventory (CSRI)

Baseline, 6 months and, if relevant, for the month prior to death

Sampson et al. BMC Palliative Care 2008 7:8   doi:10.1186/1472-684X-7-8

Open Data