Table 4.

Outcomes

Domain	Outcomes	Instrument used	Data source	Timing of measurement
Surrogate decision-maker outcome
Measures of communication and decision quality	Quality of communication (QOC)	QOC Scale*	Survey	6-month follow-up from enrolment
	Patient-centredness of care	Patient perception of patient centredness (PPPC)† scale, modified for use by surrogates. The	Survey	6-month follow-up from enrolment
	Decisional regret	Decisional Regret Scale (DRS)‡	Survey	6-month follow-up from enrolment
Psychological symptoms burden	Anxiety and depression	Hospital Anxiety and Depression Score (HADS)§	Survey	6-month follow-up from enrolment
	Post-traumatic stress	Impact of Events Scale (IES)¶	Survey	6-month follow-up from enrolment
Healthcare costs
Payer perspective	Index hospitalisation cost		Hospital billing records	Postdischarge
	Postdischarge healthcare utilisation		Hospital billing records, medical records and surrogate interview	6-month follow-up from enrolment
	Hospital readmission rates		Surrogate	6-month follow-up from enrolment
Hospital perspective	Index hospitalisation costs		UPMC health systems’ Computerised cost accounting system	Postdischarge
	ICU and hospital length of stay		Registration data, chart abstraction	Postdischarge
	Intervention costs		Administrative records of cost of training and follow-up (salary costs, training, costs, and costs to supervise and deploy the intervention)	Postdischarge
Patient-centred outcomes
	Discharge disposition (including in hospital mortality)		Registration data, chart abstraction	Postdischarge
	Functional status at 6 months	Katz ADL**	Surrogate	6-month follow-up from enrolment
	Living situation at 6 months		6-month follow-up with surrogates	6-month follow-up from enrolment
	All-cause 6-month mortality		Hospital records, 6-month follow-up with surrogates and the National Death Index	6-month follow-up from enrolment
Clinician outcomes
	Clinician burn-out	Maslach Burn-out Inventory††	Bedside nurses caring for patients enrolled in the study	Baseline, 6 months after randomisation
Process measures
	Frequency of multidisciplinary communication		Chart abstraction	Postdischarge
	Palliative care and ethics consultations		Chart abstraction	Postdischarge
	Social work involvement		Chart abstraction	Postdischarge
	Pastoral care involvement		Chart abstraction	Postdischarge
	Incidence and timing of life support decisions		Chart abstraction	Postdischarge

*QOC is a 13-item scale measuring QOC with good internal consistency (alpha=0.94), strong evidence of reliability and validity^{45 46} and established responsiveness to change.

†PPPC is a 12-item instrument that measures the patient-centredness of care and has demonstrated validity and reliability when used by surrogates. (Cronbach’s α=0.71)⁵⁰ A recent systematic review found the PPPC to be one of two best instruments to measure this construct.⁵¹

‡DRS is a 5-item assessment of ‘distress or remorse after healthcare decisions.’ It has high internal consistency and convergent validity.⁶⁹

§HADS is a 14-item assessment with subscales for anxiety and depression. Each domain has a score range of 0–21 with the following interpretation: 0–7 normal, 8–10 borderline abnormal and 11–21, abnormal.

¶IES is a 15-item tool measuring total stress (score range of 0–75) with subscales for intrusiveness (score range 0–35) and avoidance (score range 0–40). Total stress score is interpreted as follows: 0–8 subclinical range, 9–25 mild range, 26–43 moderate range, and 44+severe range. A score of ≥30 indicates a high risk of post-traumatic stress disorder. The IES is a valid, reliable and responsive 15-item instrument measuring symptoms of avoidance and intrusive thoughts.⁵⁹ It has been successfully used among ICU surrogates.^{22 27}

**Katz ADL.

††Maslach Burnout Inventory is a validated, widely used measure of clinician burnout.^70–72