Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18+
SponsorNew York University
About this trial
This study will test a care management intervention to guide end-of-life care and hospice transitions for persons with dementia and their care partners receiving home healthcare and ascertain feasibility, acceptability, fidelity, and usability of a dementia care management hospice transitions checklist. This study will also examine hospice enrollment, time to enrollment, and care partner satisfaction with the intervention. The intervention will be delivered within usual care management within a large home healthcare agency.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
Care partners of PLWD who have a diagnosis of moderate to severe dementia.
Able to provide informed consent
Care managers who regularly engage hospice transitions with care partners of PLWD
Age 18 or older
Disqualifiers
None
Trial design
Design model
Single group
Treatments tested in this trial
Dementia Care Management Checklist for Hospice Transitions
BehavioralIntervention: After appropriate care partners of hospice-eligible PLWD are identified who will be receiving the checklist intervention, care managers will perform telephonic outreach to engage them in a conversation about care needs (as they would in typical clinical practice). The telephonic outreach will be followed up with a recommendation for follow up by a medical provider who may conduct a hospice care assessment and engage the care partner in decision-making surrounding the hospice referral and enrollment process. This intervention was co-designed with care partners, home healthcare professionals, administrators, and medical providers. It is meant to be comprehensive and speak to the needs of all relevant parties engaged in the care of persons with dementia. It is developed so that it can be scaled and implemented widely.
Treatment groups
96 Participants
are divided into 1 treatment groupGroup A: Dementia Care Management Checklist for Hospice TransitionsExperimental treatment 1 intervention
Trial outcomes
Primary outcomes
1
Feasibility of the Dementia Care Management Hospice Transitions Checklist
The primary outcome is feasibility. Feasibility will be measured for each group including recruitment and retention rates, rate of completion of the intervention as the proportion of individuals who use and receive the intervention, and whether the different components of the intervention are achievable.
Time frame
After enrollment and study participation, we will collect feasibility data within 1 month after intervention receipt.Secondary outcomes
1
Acceptability of the Dementia Care Management Hospice Transitions Checklist
The secondary outcome is acceptability. Acceptability will be reflected in process measures required in a transitional care management intervention. For example, intervention components will be measured including if the care manager/interventionist successfully receives the training and resources to successfully deliver the intervention and the number of HHC professionals for whom the intervention was acceptable. Outcome measure: Percentage of participants who find the intervention acceptable.
Time frame
After intervention delivery, we will collect secondary outcome data within 1 month.Other outcomes
1
Fidelity
Fidelity will be assessed through healthcare professional adherence to study protocols and consistency in delivery of the intervention over time. Fidelity will be measured by assessing frequency of adherence to study protocols and pre-specified data collection processes and procedures (through participant response questionnaire). The percentage of individuals who maintained fidelity will also be measured.
Time frame
To be measured within 1 month of intervention delivery.2
Usability
Usability will also be assessed and measured based on the percentage of people for whom the intervention was successfully usable (care partners and HHC professionals) and whether the checklist training and integration into care management is practicable. Usability will be measured as yes/no binary responses in a follow up questionnaire.
Time frame
To be measured within 1 month of intervention delivery.3
Hospice Enrollment and Time to Enrollment
We will assess hospice enrollment and time to enrollment of the person with dementia (using the electronic health record) after the intervention.
Time frame
Hospice enrollment and time to enrollment (of the person with dementia) will be measured at 1 and 6 months after intervention receipt.4
Care Partner Satisfaction
Care partner satisfaction will be evaluated using the 20-item Family Satisfaction with Advanced Cancer Care (FAMCARE), which has been validated for use in dementia care. Scoring the Original 20-Item FAMCARE Scale Identify the Scale's Items: The scale consists of 20 individual items designed to assess various aspects of care. Apply Likert Scale Scoring: Each item is rated on a 5-point Likert scale, with responses typically including: Very Satisfied Satisfied Undecided Dissatisfied Very Dissatisfied Calculate the Overall Score: The overall score is the sum of the responses to all 20 items. Interpret the Score: A higher total score signifies greater satisfaction with the healthcare provided to the patient and themselves. If a family member rates their satisfaction on a 5-point scale from 1 (Very Dissatisfied) to 5 (Very Satisfied) for all 20 items, then a higher sum of these ratings (e.g., close to 100) would indicate high satisfaction, while a lower sum is lower satisfaction.
Time frame
To be measured within 1 month of intervention receipt.Sponsors and contacts
Click on the lead sponsor to view all of their trials.
New York University
Lead sponsor
Visiting Nurse Service of New York
Collaborator
Source ClinicalTrials.gov