Table 2 Patient and bereaved carer endpoints of the project
I. Measured by questionnaire | Measure |
Primary endpoints: | |
- Quality of life | EORTC QLQ-C30 4-item emotional functioning scale [24] |
EORTC emotional functioning short-form based on CAT item bank | |
- Symptoms | EORTC QLQ-C15-PAL [25] |
Secondary endpoints: | |
- Shared decision-making | APECC [26] |
- Patient involvement | Self-constructed questions |
- Satisfaction with care | EORTC IN–PATSAT32 [27] |
- Coping with illness | |
- Satisfaction with the intervention | Self-constructed questions |
- Socio demographic measures | Self-constructed questions |
- Quality of end-of-life care | VOICES-SF [31]a |
- Bereaved carer wellbeing | |
II. Obtained from medical files | |
- Survival; date and place of death (if applicable) | |
- Completion and content of advance directives; preferences for care; assignment of proxy decision-maker; physician orders | |
- Diagnostic procedures and treatments received by the patient, hospitalisations and specialist palliative care input. | |
III. Obtained from intervention sessions and qualitative interviews | |
Systematic cross-cultural comparison of patient experiences, responses and concerns. | |