Pediatric Cancer
Conditions
Keywords
communication, electronic medical record, pediatric cancer
Brief summary
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.
Detailed description
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.
Interventions
OTHERCancer Care Companion
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.
Sponsors
Washington University School of Medicine
National Cancer Institute (NCI)
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Eligibility Criteria for Parents: Parents of children with cancer will be enrolled if they meet the following criteria: * They are a legal guardian of a child diagnosed with cancer in the prior 4 weeks. * The child plans to receive or currently receives cancer directed therapy at St. Louis Children's Hospital. * The parent or legal guardian has access to internet through a computer or smart phone. * Speaks and reads in English * The parent or legal guardian agrees to enroll in Epic MyChart to access a proxy portal for their child. Eligibility Criteria for Clinicians: * Clinicians with patients who have parents participating may be enrolled. Clinician participants will be employed at SLCH or Washington University School of Medicine (WUSM). The clinicians will include physicians, nurse practitioners, and nurse coordinators from the leukemia/lymphoma, brain tumor, and solid tumor teams in order to represent the breadth of pediatric cancer diagnoses.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Tool feasibility | Immediately post-intervention | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Information Exchange | Baseline and immediately post-intervention | 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. |
| Trust in Physicians | Baseline and immediately post-intervention | 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. |
| Ability to navigate the healthcare system | Baseline and immediately post-intervention | 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. |
| Caregiver burden | Baseline and immediately post-intervention | 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. |
| Parental anxiety | Baseline and immediately post-intervention | 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. |
| Communication Quality | Baseline and immediately post-intervention | 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). |
| Patient perceptions of tool usability | Immediately post-intervention | 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. |
| Patient perceptions of tool usefulness | Immediately post-intervention | The semi-structured interview guide will be developed using the Unified Theory of Acceptance and Use of Technology and theory of Technology Readiness. |
| Patient perceptions of tool barriers and facilitators | Immediately post-intervention | The semi-structured interview guide will be developed using the Unified Theory of Acceptance and Use of Technology and theory of Technology Readiness. |
Countries
United States
Contacts
CONTACTBryan A Sisk, MD, MSCI
PRINCIPAL_INVESTIGATORBryan A Sisk, MD, MSCI
Washington University School of Medicine
Outcome results
None listed