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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).
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention (CHORDS) | Experimental | 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). |
|
| Usual Care | No Intervention | 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. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| CHORDS | Other | 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). |
| 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) |
| 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). |
| 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) |
Patients
Inclusion criteria:
Exclusion criteria 1) Patients with psychiatric or cognitive conditions which the hematologist believes prohibits informed consent or compliance with study procedures
Caregivers
Inclusion criteria:
Exclusion Criteria:
1) None
Hematologists
Inclusion criteria:
1) Hematologists of the patients who agree to enroll on the study who are part of WCI.
Exclusion criteria
1) None
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Rachel Rodenbach, MD, MS | Contact | 585-275-5830 | rachel_rodenbach@urmc.rochester.edu | |
| Becky Gravenstede, BA | Contact | 585-727-4728 | becky_gravenstede@urmc.rochester.edu |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Rochester | Recruiting | Rochester | New York | 14642 | United States |
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Assess the feasibility of CHORDS among patients with myeloid cancers referred for alloHCT.
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| 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) |