Cancer Care Companion
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Cancer Care Companion.
- Who it may be relevant to
- Registry conditions: Pediatric Cancer. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
A Pilot Study of Cancer Care Companion, An Electronic Health Record Tool to Improve Information Exchange and Self-Management in Pediatric Cancer
Overview
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
- Other Cancer 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 re
Primary outcome measures
- Tool feasibility [Time frame: Immediately post-intervention]
Secondary outcome measures (9)
- Information Exchange [Time frame: Baseline and immediately post-intervention]
- Trust in Physicians [Time frame: Baseline and immediately post-intervention]
- Ability to navigate the healthcare system [Time frame: Baseline and immediately post-intervention]
- Caregiver burden [Time frame: Baseline and immediately post-intervention]
- Parental anxiety [Time frame: Baseline and immediately post-intervention]
- Communication Quality [Time frame: Baseline and immediately post-intervention]
- Patient perceptions of tool usability [Time frame: Immediately post-intervention]
- Patient perceptions of tool usefulness [Time frame: Immediately post-intervention]
- Patient perceptions of tool barriers and facilitators [Time frame: Immediately post-intervention]
Eligibility 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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- N/A
- Model
- Single group
- Masking
- Open label
- Primary purpose
- Supportive care
Study locations
United States · 1 center
- Washington University School of Medicine/Saint Louis Children's Hospital — St Louis
Identifiers
NCT: NCT07278778 · 202601022 · 1R21CA290223-01A1