Table 1.
Measurements and their instruments for patients and caregivers
| Measurement | Measurement instruments | Participants | Assessment timepoint |
|---|---|---|---|
| Physical function | |||
| Ability to perform activities of daily living | Barthel Index [26] | Patient | T0-T5 |
| Frailty | 9-point Clinical Frailty Scale [27] | Patient | T0-T5 |
| Nutrition status | Mini Nutritional Assessment short-form [28] | Patient | T0-T5 |
| Functionality of oral intake | Functional oral intake scale [29] | Patient | T0-T5 |
| Risk for pressure injury | The Braden Scale for Predicting Pressure Sore Risk [30] | Patient | T0-T5 |
| Drugs for chronic disease | Self-constructed; numbers of drug | Patient | T0-T5 |
| Psychological health | |||
| Depression | 5-item Geriatric Depression Scale [31] | Patient | T0-T5 |
| Neuropsychiatric status | Neuropsychiatric Inventory [32] | Patient | T0-T5 |
| Cognitive function | |||
| Cognitive function/memory | Brain Health Test (Chinese version, Taiwan) [33] | Patient | T0-T5 |
| Severity of Dementia | Functional Assessment Staging Test [34] | Patient | T0-T5 |
| Wellbeing | |||
| QOL for patients with cognitive impairment | QOL in Alzheimer’s Disease scale [35, 36] | Patient | T0-T5 |
| QOL for people with normal cognition | World Health Organization- Five Well-Being Index [37] | Patient, caregiver | T0-T5 |
| Five-level version of EuroQol five-dimensional descriptive system [38] | Patient, caregiver | T0-T5 | |
| QOL- Home Care [39] | Patient | T0-T5 | |
| SDM and ACP | |||
| SDM self-efficacy | Decision-making Participation Self-Efficacy Scale [40] | Patient | T0, T2-T5 |
| ACP | 4 questions from ACP engagement survey [41] | Patient | T0, T2-T5 |
| Palliative care and quality of dying | |||
| Symptoms | Integrated Palliative care Outcome Scale [42] | Patient | T0-T5 |
| Needs assessment for supportive & palliative care | Supportive & Palliative Care Indicators Tool [43] | Patient | T0, T2-T5 |
| Quality of Dying | Quality of Dying in LTC [44] | Patient | NA a |
| Caregiving burden | Revised version of Zarit Burden interview | Caregiver | T0-T5 |
| Continuity and coordination of care | Self-constructed; Two items for continuity from hospital to home care, and two items for coordination of home healthcare team and LTC workers, rating with a 7-point Likert-type scale | Patient | T0-T5 |
| Care resource utilization and costs | |||
| Medical resources | Self-constructed; Items about medical resource utilization and costs | Patient | T0-T1, T3, T5 |
| Social welfare/LTC | Self-constructed; Items for the social resource utilization and costs | Patient | T0-T5 |
QOL quality of life, SDM shared decision making, ACP advance care planning, LTC long-term care
T0 = baseline; T1 = 3-month follow-up, T2 = 6-month follow-up, T3 = 12-month follow-up, T4 = 18-month follow-up, T5 = 24-month follow-up
a Quality of dying will be assessed after the patient’s death