Table 2 Study outcomes/variables, measurement tools and data collection schedule
Outcome/ variable | Measured by | Validated version* | Baseline | 6 months (t1) | 12 months (t2) | Assessed by |
|---|---|---|---|---|---|---|
Patient activation (primary outcome) | Patient activation Measure (PAM-13) [42] | German version [36] | ✓ | ✓ | ✓ | RA – at home visit |
ACP behaviour | Patient engagement survey [41] | English version [41] | ✓ | ✓ | RA – at home visit | |
Anxiety and depression | Hospital anxiety and depression scale (HADS) [40] | German version [43] | ✓ | ✓ | RA – at home visit | |
Self-reported, health-related quality of life | German version [44] | ✓ | ✓ | RA – at home visit | ||
Deaths, hospitalization, institutionalisation | Own questions | n.a. | ✓ | ✓ | ✓ | RA – at home care service & home visit |
Proxy/Family involvement** | Audit of ACP discussion | n.a. | ✓ | Nurse facilitator | ||
Sociodemographic & clinical data, hearing capacity by RAI-NH [45] & vision | Own questions | n.a. | ✓ | RA- at home care service & home visit | ||
GPs involvement | Own questions | n.a. | ✓ | ✓ | ✓ | |
Physician visits, formal & informal care | Own questions | n.a. | ✓ | ✓ | RA – at home visit | |
Healthcare preferences | Hypothetical scenarios | Adapted German version [46]*** | ✓ | ✓ | RA – at home visit | |