Considering alloHCT: Opportunities for Patient Reflection During Decision-Making Via Digital Stories (CHORDS)

Feasibility and Preliminary Efficacy of a Digital Story Intervention to Facilitate Decision-Making in Patients With Myeloid Cancers Considering Allogeneic Hematopoietic Cell Transplantation

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).

Study Overview

• Status: Recruiting
• Conditions: Myeloid Malignancy
• Intervention / Treatment: Other: CHORDS

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.

• Study Type: Interventional
• Enrollment (Estimated): 120
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Rachel Rodenbach, MD, MS; Phone Number: 585-275-5830; Email: rachel_rodenbach@urmc.rochester.edu
• Study Contact Backup: Name: Becky Gravenstede, BA; Phone Number: 585-727-4728; Email: becky_gravenstede@urmc.rochester.edu

Study Locations

• United States
  • New York
    • Rochester, New York, United States, 14642
      • Recruiting
      • University of Rochester
      • Contact: Rachel Rodenbach; Phone Number: 585-275-5830; Email: rachel_rodenbach@urmc.rochester.edu
      • Principal Investigator: Rachel Rodenbach

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

Description

Patients

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 Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Percentage of Participants Retained (Feasibility - Retention Rate)	Feasibility will be assessed based on the percentage of enrolled participants who complete both the intervention and post-intervention secondary outcome assessments. The number of participants who complete all study procedures will be divided by the total number enrolled to calculate the retention rate. Higher percentages indicate greater feasibility.	From enrollment (Day -30 to Day 0) to 2 weeks post-alloHCT office visit (Day 9-19)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Mean Change in Decisional Engagement Scale Score	Engagement in decision making will be assessed using the Decisional Engagement Scale, a self-reported measure evaluating patient involvement and perceived shared decision making. A single score will be derived according to scale instructions. Higher scores indicate greater engagement in decision making. There are 10 items in the scale, with each items score ranging from 0 to 10 (range 0-100 for the entire scale).	Baseline (Day -30 to Day 0) to 2 weeks post-alloHCT office visit (Day 9-19)
Mean Change in Decisional Conflict Scale Score	Decisional conflict will be assessed using the Decisional Conflict Scale, a validated self-report instrument that measures personal uncertainty in making health-related decisions. The total score is derived by averaging item responses according to the scoring manual (range 0-100). Higher scores indicate greater decisional conflict (worse outcome), while lower scores indicate less conflict (improvement).	Baseline (Day -30 to Day 0) to 2 weeks post-alloHCT office visit (Day 9-19)
Mean Change in Distress Thermometer Score	Psychological distress will be measured using the NCCN Distress Thermometer, a single-item visual analog scale ranging from 0 ("no distress") to 10 ("extreme distress"). Higher scores indicate greater distress.	Baseline (Day -30 to Day 0) to 2 weeks post-alloHCT office visit (Day 9-19)

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Qualitative Analysis of Patient-Hematologist Discussion of Values and Goals	Audio recordings of alloHCT office visits will be transcribed and analyzed using qualitative methods to identify the presence and nature of discussions related to patient values and treatment goals.	Following alloHCT office visit (Day 9 to 194)

Collaborators and Investigators

• Sponsor: University of Rochester

Study record dates

Study Major Dates

• Study Start (Actual): January 15, 2026
• Primary Completion (Estimated): June 30, 2028
• Study Completion (Estimated): June 30, 2028

Study Registration Dates

• First Submitted: November 17, 2025
• First Submitted That Met QC Criteria: December 2, 2025
• First Posted (Actual): December 4, 2025

Study Record Updates

• Last Update Posted (Actual): March 30, 2026
• Last Update Submitted That Met QC Criteria: March 27, 2026
• Last Verified: March 1, 2026

More Information

Terms related to this study

• Other Study ID Numbers: UOCPC25049

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No