Self-Perceived Knowledge and Comfort Discussing Palliative Care and End-of-Life Issues among Professionals Managing Neuroinflammatory Diseases.
Aliza B Ben-Zacharia, Francois A Bethoux, Angelo Volandes
https://pubmed.ncbi.nlm.nih.gov/33064605Actively Recruiting
Phase Not Applicable
Age: 18Years - 65Years
All Genders
ID06860932
A Palliative Care Model Impact on Knowledge and Attitudes
Led by Hunter College of City University of New York · Updated on 2026-04-22
50
Participants Needed
2
Research Sites
4 weeks
Total Duration
On this page
Sponsors
H
Hunter College of City University of New York
Lead Sponsor
N
National Center for Advancing Translational Sciences (NCATS)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are evaluating the impact of two different palliative care approaches on knowledge, attitudes, and decision-making among adults aged 18 to 65 with neuroinflammatory diseases such as Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorder (NMOSD), or anti-MOG. The study compares a video decision aid model to standard palliative care written information. The aim is to explore patients' preferences for care goals, decisional conflict, knowledge, and preparation for making healthcare decisions, with assessments at baseline and after three months. Participants are randomly assigned to either view a 10-minute palliative care video or receive written informational sheets about palliative care conversations and advance care planning. The video includes empathic messaging, explanations of care goals using the Physician Orders for Life Sustaining Treatment (POLST) framework, and visual aids describing life-prolonging, limited/blended, and comfort care options. Both groups complete demographic forms and pre- and post-tests at baseline and after three months. The video group can review the video as needed using iPads, and an advance care planning facilitator guide supports consistent delivery of the intervention. During the study, participants will report their goals-of-care preferences, cardiopulmonary resuscitation (CPR) and ventilatory support choices at several timepoints: baseline, immediately after the intervention or control material, and after three months via phone follow-up. Researchers will assess treatment preferences, knowledge about palliative care, decisional conflict, and preparation for decision making. They will also explore changes in preferences and documentation of palliative care conversations over time. The total participant involvement includes initial visits and a three-month follow-up assessment.
CONDITIONS
Brief Title
A Palliative Care Model Impact on Knowledge and Attitudes
Who Can Participate
Age: 18Years - 65Years
All Genders
Eligibility Criteria
You may qualify if you...
- Diagnosed with MS, NMOSD, or anti-MOG at least 2 years after diagnosis
- Aged 18 to 65 years
- Speak English as all study materials are in English
You will not qualify if you...
- Visually impaired
- Psychological state not appropriate for palliative care discussions as determined by the Patient Health Questionnaire 9 (PHQ9)
- Score of 11 or higher on PHQ9 indicating major depressive disorder
- Unable to participate in palliative care discussions due to cognitive impairment as determined by Processing Speed Test (PST) score below -1.5 Z score
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Enrollment and Baseline Assessment
Duration - 1 day
Participants provide baseline goals-of-care preferences and other relevant information before receiving the intervention or control materials.
1 baseline visit (in-person)
Intervention
Duration - Same day as baseline
Participants either watch a palliative care video or review written palliative care materials to support advance care planning discussions.
1 visit (in-person)
Follow-up Assessment
Duration - 3 months after baseline
Participants are contacted by telephone to reassess goals-of-care preferences and discuss any changes after three months.
1 follow-up phone call
Trial Site Locations
Total: 2 locations
1
Judith Jaffe Multiple Sclerosis Center
New York, New York, United States, 10021
Actively Recruiting
2
Hunter College
New York, New York, United States, 10128
Actively Recruiting
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Research Team
A
Aliza Ben-Zacharia, PhD
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
2
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Published Research Related To This Trial
Palliative Care Knowledge and Attitudes Among Patients With Neuroinflammatory Diseases.
Aliza Bitton Ben-Zacharia, Helen T Brugger, Stephanie Carbone...
https://pubmed.ncbi.nlm.nih.gov/37610856