Table 1

Overview of timing of assessments, including required time investment per visit/questionnaire

Moment (months)Neurocognitive testsPatient and family experiences (time in min)Functional outcomes
(SF-36)
Cost-effectivity questionnaires (EQ-5D-5L, iMTA MCQ, iMTA PCQ)Other
EnrolmentInformed consent, IQCODE-N, pregnancy test (if applicable), EKG
ICU study period (3×/day)CAM-ICU/ICDSC, RASS
ICU study period (once daily)IMS, RCSQ. Only when on study medication: EKG, Simpson Angus Scale
0 (discharge from hospital)Patient: ICU-MT15+DEQ15
Family: DEQ2
130 min
345–60 minPatient: IES-R5+ICU MT15+DEQ15
Family: IES-R5+CSI5+DEQ2
10 min30 min
630 min
1245–60 min10 min30 min
  • Neurocognitive tests: Montreal Cognitive Assessment (MOCA), Rey Auditory Verbal Learning Test, Semantic fluency, Digit Span (WAIS-IV), Trailmaking tests A and B, Boston naming Test (short version), Hospital Anxiety and Depression Scale (HADS).

  • Simpson Angus Scale=measures muscle rigidity and other associated movement disorders.

  • With the exception of the neurocognitive tests, all aforementioned tools are questionnaires that can be administered at home. Real-life visits only need to be paid in order to perform the neurocognitive tests.

  • CSI, Caregiver Strain Index, assesses the strain experienced by the caregiver; DEQ, Delirium Experience Questionnaire, measures experiences linked to delirium; EKG, Electrocardiography; EQ-5D-5L, assesses the general health status; ICU-MT, ICU-Memory Tool, assesses the experience and memories of ICU admission; IES-R, Impact of Event Scale Revised, assesses distress linked to a traumatic experience (i.e. experiencing delirium); IMS, ICU Mobility Scale, measures mobility during ICU admission; iMTA MCQ, instituut Beleid & Management Gezondheidszorg Medical Consumption Questionnaire (healthcare use); IQCODE-N, Informant Questionnaire on Cognitive Decline in the Elderly – Dutch version; RCSQ, Richards-Campbell Sleep Questionnaire, measures quality of sleep; SF-36, Short Form-36, measures the health-related quality of life.