I. Measured by questionnaire | Measurement instrument |
Patients | |
Concerns, expectations and preferences of patients around dying and end-of-life care | Self-developed questions adapted from the Serious Illness Conversation Guide44 and the AEOLI questionnaire45 |
Symptom load | Edmonton Symptom Assessment System (ESAS)46 |
Health-related quality of life (HRQoL) and well-being | EORTC QLQ-C15-PAL quality of life question47 and EuroQol 5 Dimension questionnaire (EQ-5D-5L)48 ICECAP Supportive Care Measure (ICECAP-SCM)49 |
Attitudes towards euthanasia* | 10-item Euthanasia scale50 |
Health and social care resource use, absenteeism from work | (Partial) Health Economics Questionnaire (HEQ)51 |
Sociodemographic characteristics | Self-developed questions and HEQ |
Relatives | |
Concerns, expectations and preferences around dying and end-of-life care | Self-developed questions inspired by the Serious Illness Conversation Guide and the AEOLI questionnaire |
Health-related quality of life (HRQoL) | EORTC QLQ-C15-PAL and EQ-5D-5L |
Well-being | ICECAP Close Person Questionnaire (ICECAP-CPM)52 |
Informal care provision | iMTA Valuation of Informal Care Questionnaire (iVICQ)53 and Informal Care Cost Assessment Questionnaire (CIIQ)54 |
Attitudes towards euthanasia | 10-item Euthanasia scale |
Bereavement | Hogan Grief Reaction Checklist (HGRC, despair and personal growth subscales)55 |
Quality of care for dying patients | International questionnaire Care of the Dying Evaluation (iCODE)56 |
Physicians | |
Patients’ diagnosis, co-morbidities and life expectancy, perspective on patients’ treatment aims and functional status | Based on the SPICT-criteria and the Australian version of the Karnofsky Performance Status57 |
Evaluation of care in the dying phase | Adapted and based on the Swedish Quality of Dying Registry58 |
II. Obtained from medical files | |
Use of medical interventions, medication and costs of medical care in the last week of life | |
Patient survival | |
III. Obtained from qualitative interviews | |
In-depth insights into experiences, concerns, expectations and preferences around dying and end-of-life care among patients, relatives and healthcare professionals |
*In Norway and Iceland, one self-developed question will be used instead of the 10-item Euthanasia scale. No questions will be asked about euthanasia in Germany. Researchers from these countries were concerned that study participants would become anxious by these questions.