Table 3 Study outcome measures
Carer | Â |
|---|---|
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 | Â |
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 | Â |
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 | Â |
Referrals | To community palliative care |
Economic | Â |
Service use costs [30] Client Service Receipt Inventory (CSRI) | Baseline, 6 months and, if relevant, for the month prior to death |