Table 3.

Instruments and evaluation periods for the assessment of long-term patient-relevant outcomes

Outcome category	Instruments	At discharge*	After discharge*						Other time	References
			28–30 d/1 m	60 d/2 m	90 d/3 m	180 d/6 m	1y	3–5 y
Survival (n=24)	Mortality		x†							44–46 48 54 64–67 71 74–76
			x	x	x					63
					x					57 61 69
					x‡					61 69
			x‡			x‡				70
						x‡				59
							x§			42
							x¶			42 56 68
								x‡		60
									At discharge to rehabilitation, to home and in rehabilitation	39
HrQoL (n=5)	SF-36				x					62
	EQ5D VAS				x					52
	EQ5D VAS				x**	x**				59
	EQ5D domain scores, EQ5D VAS						x			73
	QALYs						x§			42
PICS—cognition (n=9)	Modified Rankin Scale; Glasgow Outcome Scale Extended						x¶			68
	Glasgow Outcome Scale				x¶					55
	Modified Rankin Scale				x§					61
	Functional Independence Measure	x								62
	CAM-ICU; Digit Span Forward and Backward test; TMT A and B	x††								40
	Tower Test; dysexecutive questionnaire, MMSE	x			x					52
	Glasgow Coma Scale	x								69 73
	ASIA motor and sensitive score	x					x¶			56
PICS—physical health (n=5)	Physical Function ICU Test-scored, Functional Independence Measure	x								62
	Timed Up-and-Go; Katz Activities of Daily Living; Functional Activities Questionnaire	x			x					52
	Mobilisation level	x								69
	ASIA motor and sensitive score	x					x¶			56
	Mean physical component summary score, Barthel index				x§					61
PICS—mental health (n=4)	Sickness Impact Profile		x§	x§	x§					72
	IES-R; HADS; need for psychotherapy, anxiolytic and/or antidepressant medication						x			73
	Antipsychotic medication use	x								49
	Mean SF-36 mental component summary score				x§					61
Care-related outcomes (n=17)	Discharge destination	x								42 47 48 50 51 53 59
	Change in residence	x								41
	Discharge to usual residence		x§			x§				70
	Return to independent living	x								75
	ICU readmission rate, ICU discharge destination other than home	x								53
	Inappropriate continuation of stress ulcer prophylaxis	x								58
	ICU-free days and ventilator-free days				x¶					55 57
	Ventilator-free days		x‡‡							57 74
	Readmission rate		x							43
	Risk of remaining in the ICU								Until day 20	39
	Discharge diagnosis of aspiration pneumonia	x								61
Adverse events (n=1)	Adverse events				x‡					69
Social health (n=1)	Return to work						x			73

Studies^{68 69} are separate outcome analyses of unique data collected within one clinical trial (ClinicalTrials.gov identifier: NCT01656317).

*ICU and/or hospital discharge.

†After discharge, except for one study that considered those discharged before 28 days to be alive⁴⁴ and one study that assessed 30-day mortality after hospital admission.⁷⁶

‡After stroke.

§After ICU/hospital admission.

¶After trauma/haemorrhage.

**EQ5D VAS measured at 90-180 days after the index event.

††Right after ICU discharge.

‡‡After trauma⁵⁷ or hospital admission.⁷⁴

ASIA, American Spinal Injury Association; CAM-ICU, Confusion Assessment Method for the ICU; d, days; EQ5D, EuroQol 5 dimensions; HADS, Hospital Anxiety and Depression Scale; HrQoL, health-related quality of life; ICU, intensive care unit; IES-R, Impact of Event Scale-Revised; m, months; MMSE, Mini-Mental State Examination; QALY, quality-adjusted life year; SF-36, Short Form (36); TMT, Trail Making Test; VAS, visual analogue scale; y, years.