An interventional study of Nurse-facilitated advance care planning intervention in Dementia, sponsored by The University of Hong Kong. Completed at 1 site in Hong Kong. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-05-14.
Sponsored by The University of Hong Kong · Not applicable, Interventional, and Health services research
The goal of this clinical trial is to evaluate the effects of a nurse-facilitated post-discharge advance care planning intervention with family surrogates of dementia patients on outcomes that reflect the preparedness of surrogates in decision-making.
The main question it aims to answer is, whether the ACP intervention as compared with usual care will increase family surrogates' self-efficacy in surrogate decision-making and reduce their levels of distress, and increase patient comfort and reduce acute healthcare utilization at 2 and 6 months.
Participants will be randomized to ACP intervention vs. usual care.
Researchers will compare the intervention group and control group to see any differences in:
In order to test the ACP interventions that aim to engage surrogates' participation in ACP and improve their preparedness for decision-making rather than on documentation of advance care plans alone, the research team has developed a pilot structured, nurse-facilitated post-discharge ACP intervention with the aim to improve surrogates' preparedness for in-the-moment decision-making.
It does so by incorporating best practices for ACP communication, drawing from prior work of the research team and existing literature, combined with a focus on developing surrogates' self-efficacy for decision-making guided by Bandura's Social Cognitive Theory.
This application aims to test the intervention's effects on surrogate outcomes (decision-making self-efficacy and distress), patient outcomes (patient comfort and healthcare utilization), as well as process outcomes (ACP documentation, end-of-life care discussions between family members, and enrolment in end-of-life care programs).
The research hypotheses to be tested are as follows: the investigators will test whether the ACP intervention as compared with usual care will increase family surrogates' self-efficacy in surrogate decision-making and reduce their levels of distress, and increase patient comfort and reduce acute healthcare utilization at 2 and 6 months.
2,172 studies on the registry are indexed under Dementia; 540 are open to participants now.
This study's enrollment of 58 is below the median of 83 across 1,629 interventional studies indexed under Dementia.
Browse Dementia studies →The University of Hong Kong is the lead sponsor of 1,262 studies on the registry; 340 are open to participants now.
Of its 8 completed or terminated interventional studies of FDA-regulated products, 0 (0%) have results posted.
Counted across the registry records on this site, refreshed daily.
Dyads of patients with dementia admitted for an unplanned hospital admission and their family surrogate will be eligible for the study.
Inclusion Criteria of patients:
Exclusion Criteria of patients:
Inclusion Criteria of surrogates:
The intervention consists of two components: 1. Palliative care needs assessment During the patient's hospitalization, the ACP nurse facilitator will conduct a palliative care needs assessment including assessment of patient's dementia severity (using the FAST scale), symptoms, clinical condition, nutritional and functional status, as well as psychosocial information. 2. Structured nurse-facilitated post-discharge ACP consultations with use of video decisions aids * ACP consultation 1 (1-2 weeks post discharge) * Video decision aids (Between consultations 1 and 2) * ACP consultation 2 (2-3 weeks post discharge) * ACP consultation 3 (3-4 weeks post discharge), if needed At the completion of the ACP intervention, the ACP nurse facilitator may refer patients to the CGAT EOL program via the link nurse if fulfill the program criteria and agreed by the family surrogate(s).
Other: Nurse-facilitated advance care planning intervention
Patient and family surrogate dyads will receive usual hospital and post-discharge care. A publicly available information leaflet on advance care planning from the Hospital Authority's website will be given to control family surrogates after randomization. If a surrogate seeks assistance in discussing advance care planning, the research staff will advise the surrogate to speak with the patient's medical providers.
The intervention consists of two components: Component 1. Palliative care needs assessment - The research nurse will conduct a palliative care needs assessment and also review related information from the medical chart, which will enable the nurse to provide tailored information on the patient's illness, prognosis, and palliative care needs during subsequent ACP consultations. Component 2: Structured nurse-facilitated ACP consultations - The research nurse will conduct post-discharge ACP consultations with the family surrogate, with content that includes: assess readiness for discussions, introduce video decision aides to provide related ACP information and share examples of family surrogates with similar experiences.
Modified Family Member Decision-Making Self-efficacy Scale (FDMSE) - Chinese version
This is a modified 17-item version of the FDMSE, a valid and reliable scale that quantifies a family member's confidence (0-100, where 100 = greatest self-efficacy) in end-of-life care decision-making for a loved one.
Time frame: Baseline, 2-month, 6-month
Family Distress in Advanced Dementia Scale (FDAD) Dementia Preparedness Subscale - Chinese version
The FDAD is a validated 21-item scale rated on a 1-5 scale, with higher scores indicating greater family distress. The scale assesses three domains of distress of family members of nursing home residents with dementia: Emotional Distress, Dementia Preparedness, and Clinician Relations. The Chinese version of the FDAD has high content validity (CVI = 0.95). It has good internal consistency (Cronbach's alpha 0.83) and moderate test-retest reliability (ICC = 0.64). We will use the 5-item Dementia Preparedness subscale to evaluate family distress associated with lack of knowledge of the course of dementia and surrogate medical decision making.
Time frame: Baseline, 2-month, 6-month
End-of-life care discussions with other family members
The number of conversations which the surrogate has with other family members regarding end-of-life care decisions for the patient with advanced dementia.
Time frame: Baseline, 2-month, 6-month
Documentation of ACP discussions with medical providers
Information on the date of ACP discussion, type of clinician(s) involved, and care decisions in the Hospital Authority Clinical Management System.
Time frame: Baseline, 2-month, 6-month
Enrolment in Community Geriatric Assessment Team End-of-Life (CGAT EOL) care program
Occurrence and date of new enrolment in the CGAT EOL care program in the Hospital Authority Clinical Management System.
Time frame: 2-month, 6-month
Comfort Assessment in Dying with Dementia (CAD-EOLD)
Measure of common symptoms and conditions to assess comfort of advanced dementia patients across 4 domains: Physical Distress, Emotional Distress, Well Being, and Dying Symptoms.
Time frame: 2-month, 6-month
Unplanned hospital admissions and hospitalization days
The number of unplanned hospital admissions and hospitalization days in public and private hospitals.
Time frame: 2-month, 6-month
Plan to share: No
No publications or documents are linked to this record.
This study is completed, as verified in Mar 2025. You cannot join it, but the record below documents what was studied.
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The University of Hong Kong