Purpose

This is a two-arm pilot randomized trial that assesses the feasibility and preliminary efficacy of a digital story and values clarification intervention (Considering alloHCT: Opportunities for Patient Reflection During Decision-Making via Digital Stories [CHORDS]) compared to usual care among patients with myeloid cancers considering allogeneic hematopoietic cell transplantation (alloHCT).

Condition

Eligibility

Eligible Ages
Over 21 Years
Eligible Sex
All
Accepts Healthy Volunteers
No

Inclusion Criteria

  1. Age >21 years old 2. Diagnosis of myeloid cancer (AML, MDS, myelofibrosis, CML, or MDS/MPN) 3. Being considered for alloHCT 4. Able to provide informed consent 5. Able to speak English. The reason for this is because the digital stories have been created in the English language and their multimedia form cannot easily be translated.

Exclusion Criteria

  1. ) Patients with psychiatric or cognitive conditions which the hematologist believes prohibits informed consent or compliance with study procedures Caregivers Inclusion criteria: 1. Age >18 years old 2. Selected by the 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." 3. Caregiver may be paid/professional or informal caregiver 4. Able to provide informed consent 5. Able to speak English Exclusion Criteria: 1) None Hematologists Inclusion criteria: 1) Hematologists of the patients who agree to enroll on the study who are part of Wilmot Cancer Institute. Exclusion criteria 1) None

Study Design

Phase
N/A
Study Type
Interventional
Allocation
Randomized
Intervention Model
Parallel Assignment
Intervention Model Description
Assess the feasibility of CHORDS among patients with myeloid cancers referred for alloHCT.
Primary Purpose
Supportive Care
Masking
None (Open Label)

Arm Groups

ArmDescriptionAssigned Intervention
Experimental
Intervention (CHORDS)
The CHORDS intervention consists of 1) digital stories created by individuals who previously underwent consultation for alloHCT and 2) explicit values clarification exercises designed to help patients reflect on their emotions and clarify what matters to them, including a) an interactive workbook, and b) best-worst scaling (BWS).
  • Other: CHORDS
    The CHORDS intervention consists of 1) digital stories created by individuals who previously underwent consultation for alloHCT and 2) explicit values clarification exercises designed to help patients reflect on their emotions and clarify what matters to them, including a) an interactive workbook, and b) best-worst scaling (BWS).
No Intervention
Usual Care
Patients randomized to the usual care arm will receive standard of care. Patients (and their caregivers when available) randomized to usual care will not participate in CHORDS. Patients and caregivers will complete baseline (T1) and post-alloHCT office visit (T3, T4, T5) assessments.

Recruiting Locations

University of Rochester
Rochester 5134086, New York 5128638 14642
Contact:
Rachel Rodenbach
585-275-5830
rachel_rodenbach@urmc.rochester.edu

More Details

Status
Recruiting
Sponsor
University of Rochester

Study Contact

Rachel Rodenbach, MD, MS
585-275-5830
rachel_rodenbach@urmc.rochester.edu

Detailed Description

Our proposed intervention is Considering alloHCT: Opportunities for Patient Reflection During Decision-Making via Digital Stories (CHORDS), which includes: 1) real-life digital stories of individuals with similar experiences who previously underwent consultation for allogeneic hematopoietic cell transplantation and their caregivers and 2) explicit values clarification exercises designed to help patients reflect on their emotions and clarify what matters to them, including a) an interactive workbook, and b) best-worst scaling. Together, they help patients reflect on their values and prioritize their own needs and goals, enhance emotional awareness, and gain experiential knowledge from peers to better understand the real-life implications of treatment risks and benefits.

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.