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| ID | Type | Description | Link |
|---|---|---|---|
| 1R21CA290223-01A1 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Cancer Institute (NCI) | NIH |
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This study invites parents of children with cancer to use an electronic health record (EHR)-based communication tool, called the Cancer Care Companion, and assess the acceptability, appropriateness, and feasibility of the tool.
High-quality communication between clinicians and parents is critical to providing optimal care for pediatric cancer. This study engages parents of children with cancer to use an electronic health record (EHR)-based communication tool, called the Cancer Care Companion, and assess the acceptability, appropriateness, and feasibility of the tool. Parent participants will be given 3 months of access to Cancer Care Companion, after which the participant(s) will complete a semi-structured interview. Participants will also complete a survey of validated measures before and after the intervention.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| All Participants | Experimental | All participants receive the Cancer Care Companion program. There is no control or comparison group. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Cancer Care Companion | Other | The investigators will provide parents access the Cancer Care Companion through Epic MyChart. If a participant has not enrolled in MyChart, the investigator will provide instructional materials and assist with registration. Parents will use the Cancer Care Companion for 3 months during which they will complete tasks including educational modules, check-in surveys, and patient stories. Participants may opt-out of receiving the patient stories. During the 3-month intervention, participants will receive 13 educational tasks, 7 check-in surveys, and 5 patient stories (if requested). The Day 1 educational task will include an overview of the program and further instructions. After enrollment, participants will retain access to Cancer Care Companion for at least 3 months, during which they can revisit the content. |
| Measure | Description | Time Frame |
|---|---|---|
| Tool feasibility | The number of tasks marked "complete" divided by total tasks delivered, reported as a percentage per participant, with success defined as meeting or exceeding a 70% completion rate. | Immediately post-intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Information Exchange | Health Literacy of Caregivers Scale-Cancer is a validated tool measuring 10 domains relevant to caregiver health literacy. The information exchange domain includes 4 items with a 4-point Likert response scale assessing whether caregivers have adequate information about cancer and cancer management. | Baseline and immediately post-intervention |
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Eligibility Criteria for Parents:
Parents of children with cancer will be enrolled if they meet the following criteria:
Eligibility Criteria for Clinicians:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Bryan A Sisk, MD, MSCI | Contact | 314-273-9084 | siskb@wustl.edu |
| Name | Affiliation | Role |
|---|---|---|
| Bryan A Sisk, MD, MSCI | Washington University School of Medicine | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Washington University School of Medicine/Saint Louis Children's Hospital | Recruiting | St Louis | Missouri | 63110 | United States |
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| Label | URL |
|---|---|
| Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine | View source |
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All data will be submitted to the Qualitative Data Repository at Syracuse University.
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| ID | Term |
|---|---|
| D009369 | Neoplasms |
| D003142 | Communication |
| ID | Term |
|---|---|
| D001519 | Behavior |
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| Trust in Physicians | The Trust in Physician Scale is an 11-item tool using a 5-point Likert response scale to assess respondents' perceptions of their doctors' ability to manage (diagnose, treat, make appropriate referrals) their health problem. | Baseline and immediately post-intervention |
| Ability to navigate the healthcare system | Health Literacy of Caregivers Scale-Cancer is a validated tool measuring 10 domains relevant to caregiver health literacy. The healthcare system domain includes 6 items with a 4-point Likert response scale assessing whether caregivers understand the healthcare system and how to find care for their child. | Baseline and immediately post-intervention |
| Caregiver burden | The short version of the Burden Scale for Family Caregivers is a validated 10-item tool with a 4-point Likert response scale assessing caregiver burden and how it affects the caregivers' physical, mental, and social well-being. | Baseline and immediately post-intervention |
| Parental anxiety | The PROMIS Anxiety SF 4a is a validated 4-item tool with a 5-point Likert response scale used to measure emotional distress and anxiety. | Baseline and immediately post-intervention |
| Communication Quality | The PedCOM Short Form is a validated 8-item tool using a 5-point Likert response scale that assesses dimensions of communication quality (information exchange, building relationships, making decisions, responding to emotions, supporting hope, providing validation, managing uncertainty, and enabling self-management). | Baseline and immediately post-intervention |
| Patient perceptions of tool usability | The System Usability Scale is a validated 10-item tool with a 5-point Likert response scale that measures users perceptions of the complexity, usability, functionality, and value of technological systems. | Immediately post-intervention |
| Patient perceptions of tool usefulness | The semi-structured interview guide will be developed using the Unified Theory of Acceptance and Use of Technology and theory of Technology Readiness. | Immediately post-intervention |
| Patient perceptions of tool barriers and facilitators | The semi-structured interview guide will be developed using the Unified Theory of Acceptance and Use of Technology and theory of Technology Readiness. | Immediately post-intervention |