NCT04745676

Brief Summary

This is a pilot study to evaluate the usability and feasibility of a telehealth-delivered advance care planning intervention among 20 older patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS).

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
36

participants targeted

Target at P25-P50 for not_applicable

Timeline
Completed

Started Mar 2021

Typical duration for not_applicable

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

February 4, 2021

Completed
5 days until next milestone

First Posted

Study publicly available on registry

February 9, 2021

Completed
1 month until next milestone

Study Start

First participant enrolled

March 25, 2021

Completed
1.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

March 1, 2023

Completed
4 months until next milestone

Study Completion

Last participant's last visit for all outcomes

July 12, 2023

Completed
1.6 years until next milestone

Results Posted

Study results publicly available

February 10, 2025

Completed
Last Updated

March 31, 2026

Status Verified

March 1, 2026

Enrollment Period

1.9 years

First QC Date

February 4, 2021

Results QC Date

March 20, 2024

Last Update Submit

March 29, 2026

Conditions

Keywords

Acute Myeloid LeukemiaMyelodysplastic Syndromes

Outcome Measures

Primary Outcomes (3)

  • Feasibility - Retention Rate

    Percentage of patients, caregivers, and clinicians who consented to the study, ultimately completing all study components

    12 Weeks

  • Recruitment Rate

    Number of patients, caregivers, and clinicians who are approached and agree to enroll.

    12 Weeks

  • Mean Usability of the Telehealth Advance Care Planning Intervention Using the Telehealth Usability Questionnaire (TUQ)

    Telehealth Usability Questionnaire (TUQ) - A questionnaire (22 questions scored from 1 to 7, a higher score indicates greater usability) assessing the usability of telehealth implementation across the population (for patients or caregivers), the mean of all questions is then calculated, range 1-7, with an average of greater than 5 considered usable.

    12 Weeks

Secondary Outcomes (5)

  • Pre- and Post-Intervention Change of the Mean Score for the General Anxiety Disorder-7 (GAD-7)

    12 Weeks

  • Pre- and Post-Intervention Change of the Mean Score for the Patient Health Questionnaire-9 (PHQ-9)

    12 Weeks

  • Pre- and Post-Intervention Change of the Mean Score for the Distress Thermometer

    12 Weeks

  • Pre- and Post-Intervention Change of the Mean Score for the Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu)

    12 Weeks

  • Post-Intervention Mean Score for the Health Care Communication Questionnaire (HCCQ)

    12 weeks

Study Arms (3)

Patient

EXPERIMENTAL

The SICG program consists of the Serious Illness Conversation Guide as well as training and system-level support for physicians to conduct ACP conversations.

Behavioral: TelehealthBehavioral: Control

Caregiver

EXPERIMENTAL

The SICG program consists of the Serious Illness Conversation Guide as well as training and system-level support for physicians to conduct ACP conversations.

Behavioral: TelehealthBehavioral: Control

Oncology and Palliative Provider

EXPERIMENTAL

The SICG program consists of the Serious Illness Conversation Guide as well as training and system-level support for physicians to conduct ACP conversations.

Behavioral: TelehealthBehavioral: Control

Interventions

TelehealthBEHAVIORAL

Telehealth ACP intervention advance care planning intervention

CaregiverOncology and Palliative ProviderPatient
ControlBEHAVIORAL

For the control arm, no telehealth visit will be scheduled.

CaregiverOncology and Palliative ProviderPatient

Eligibility Criteria

Age60 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Age ≥60 years (conventional definition of older age in AML/MDS)
  • AML or MDS diagnosis
  • Being managed in the outpatient settings
  • Able to provide informed consent
  • English-speaking

You may not qualify if:

  • Age ≥21 years
  • Selected by patient when asked if there is a "family member, partner, friend, or caregiver with whom you discuss or who can be helpful in health-related matters"
  • Able to provide informed consent
  • English-speaking

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Rochester

Rochester, New York, 14642, United States

Location

Related Publications (3)

  • LoCastro M, Wang Y, Yu T, Mortaz-Hedjri S, Mendler J, Norton S, Bernacki R, Carroll T, Klepin H, Wedow L, Goonan S, Erdos H, Bagnato B, Liesveld J, Huselton E, Kluger B, Loh KP. Clinicians' Perspectives on the Telehealth Serious Illness Care Program for Older Adults With Myeloid Malignancies: Single-Arm Pilot Study. JMIR Form Res. 2024 Jun 27;8:e58503. doi: 10.2196/58503.

  • LoCastro M, Mortaz-Hedjri S, Wang Y, Mendler JH, Norton S, Bernacki R, Carroll T, Klepin H, Liesveld J, Huselton E, Kluger B, Loh KP. Telehealth serious illness care program for older adults with hematologic malignancies: a single-arm pilot study. Blood Adv. 2023 Dec 26;7(24):7597-7607. doi: 10.1182/bloodadvances.2023011046.

  • LoCastro M, Sanapala C, Mendler JH, Norton S, Bernacki R, Carroll T, Klepin HD, Watson E, Liesveld J, Huselton E, O'Dwyer K, Baran A, Flannery M, Kluger B, Loh KP. Adaptation of Serious Illness Care Program to be delivered via telehealth for older patients with hematologic malignancy. Blood Adv. 2023 May 9;7(9):1871-1884. doi: 10.1182/bloodadvances.2022008996.

MeSH Terms

Conditions

Leukemia, Myeloid, AcuteMyelodysplastic Syndromes

Interventions

Telemedicine

Condition Hierarchy (Ancestors)

Leukemia, MyeloidLeukemiaNeoplasms by Histologic TypeNeoplasmsHematologic DiseasesHemic and Lymphatic DiseasesBone Marrow Diseases

Intervention Hierarchy (Ancestors)

Delivery of Health CarePatient Care ManagementHealth Services Administration

Results Point of Contact

Title
Research Project Manager
Organization
University of Rochester Medical Center, Wilmot Cancer Institute

Study Officials

  • Kah Poh Loh

    Univ. of Rochester Wilmot Cancer Center

    PRINCIPAL INVESTIGATOR

Publication Agreements

PI is Sponsor Employee
No
Restrictive Agreement
No

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
NONE
Purpose
SUPPORTIVE CARE
Intervention Model
SINGLE GROUP
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Associate Professor - Department of Medicine, Hematology/Oncology (SMD)

Study Record Dates

First Submitted

February 4, 2021

First Posted

February 9, 2021

Study Start

March 25, 2021

Primary Completion

March 1, 2023

Study Completion

July 12, 2023

Last Updated

March 31, 2026

Results First Posted

February 10, 2025

Record last verified: 2026-03

Data Sharing

IPD Sharing
Will share

A complete and final study protocol will be made publicly available through the University of Rochester Cancer Center Community Oncology Research Program Research Base Protocol and Data Sharing Committee. The full protocol and data will be made publicly available no later than the publication date of the study findings from the final dataset. The protocol will include a detailed description of the study population, hypotheses tested, measurement and assessment information, data definitions and codes, and the analysis plan utilized. We will be collecting identifying information. The final dataset will be stripped of identifiers prior to release for sharing. Published papers will be made available in portable document format.

Shared Documents
STUDY PROTOCOL
Time Frame
The data will be available for 7 years from accrual of the first subject.

Locations