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.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
40
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.
Washington University School of Medicine/Saint Louis Children's Hospital
St Louis, Missouri, United States
RECRUITINGTool 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.
Time frame: Immediately post-intervention
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.
Time frame: Baseline and immediately post-intervention
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.
Time frame: 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.
Time frame: 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.
Time frame: Baseline and immediately post-intervention
Parental anxiety
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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.
Time frame: 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).
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: Immediately post-intervention