Table 2 Outcome measures and assessment schedule

Outcome

Assessment tool

Baseline

Month 1

Month 3

Month 6

Month 9

Month 12

Status tracheal cannula

(primary)

Decannulated [Y/N]

[Reasons/Checklist)

Unblocking time/day [min.]

Total duration

x

x

x

x

x

x

Status mechanical ventilation (primary)

Weaned [Y/N]

Current weaning stage

Total duration

x

x

x

x

x

x

Survival

Death [Y/N]

Time to death after discharge

x

x

x

x

x

Medical devices (e.g. PEG tube)

Checklist

x

x

x

x

x

x

Specific neurological medication

Checklist

x

x

x

x

x

x

Global neurological outcome

Glasgow Outcome Scale Extended (GOS-E)

x

x

x

x

x

x

Neurological status:

Level of consciousness Degree of paresis

Spasticity

Dysphagia

Coma Recovery Scale-Revised (CRS-R)

Motricity Index (MI)

Resistance to Passive Movement Scale (REPAS)

Bogenhausener Dysphagie Score (BODS)

Penetrations-Aspirations Skala (PAS)

x

x

x

x

x

x

Pain scale

Visual analogue scale (0 – 100)

x

x

x

x

x

x

Activities of daily life

Barthel-Index (BI)

x

x

x

x

x

x

Quality of life (QOL)

(Patient and relatives)

European Quality of Life-5 Dimensions

(EQ-5D-5L)

x

x

x

x

x

x

Social participation

(Patient and relatives)

WHO Disability Assessment Schedule

(WHODAS 2.0)

x

x

Depression/anxiety

(Patient and relatives)

Hospital Anxiety and Depression Scale

(HADS)

x

x

x

x

x

x

Burdens on the relatives

(relatives)

Modified Caregiver Strain Index (MCSI)

x

x

x

x

x

Complications

(including unplanned hospitalisations)

Semi-standardised free text

x

x

x

x

x

x

Satisfaction with health care situation (Patient, relatives, and home-based intensive care personnel)

10-point Likert scale

x

x

x

x

x

Adherence to the treatment pathway (IG)

[Y/N]

Checklist

Free text

x

x

x

x

x

Utilisation of healthcare

(e.g. HSINC, hospital stays, outpatient medical services, aids)

Checklist

AOK Bavaria data

x

x

x

x

x

Costs at the expense of SHI (separated according to sectors, cost types)

Costs per type in Euro [€] (AOK Bavaria)

x

Whereabouts of the patient

Checklist

x

x

x

x

x