Educational Video for Childhood Cancer

Overseen By Suzanne MacFarland, MD

Age: Any Age

Sex: Any

Trial Phase: Academic

Sponsor: Children's Hospital of Philadelphia

Disqualifiers: Not meeting inclusion criteria

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial examines the effectiveness of an educational video for families facing a new cancer diagnosis in children. The researchers aim to determine if the video helps families better understand genetic testing, which matches tumor and normal cells to identify the best treatment. Two groups will participate: one will receive the usual explanation from a doctor, while the other will receive that explanation plus the video. Eligible families have a child recently diagnosed with cancer and referred for genetic testing at the Children's Hospital of Philadelphia. Participants should have a good understanding of and ability to speak English. As an unphased trial, this study offers families an opportunity to contribute to research that could enhance understanding and communication about genetic testing.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that this educational video is safe for children and adolescents?

Research has shown that educational videos for genetic testing in children with cancer are safe. These videos enhance families' understanding of genetic testing. No reports indicate harm or side effects from the videos. They serve as an additional tool to support learning and decision-making. As this trial focuses on an educational method rather than a drug or medical procedure, safety concerns remain minimal. ^{1 2}

Why are researchers excited about this trial?

Researchers are excited about using an educational video for genetic testing in childhood cancer because it could enhance understanding and engagement. Unlike the standard approach, which relies solely on provider-based education, the addition of an educational video offers a visual and accessible way for families to grasp complex genetic information. This method aims to empower families with better insights, potentially leading to more informed decision-making and comfort during the testing process.

What evidence suggests that this educational video is effective for genetic testing education?

Research has shown that educational videos can help parents understand genetic testing for childhood cancer. One study found that parents considered these videos helpful for grasping complex genetic information. Satisfaction with genetic counseling remained consistent whether parents watched the video or not, indicating that videos enhance understanding without replacing expert advice. In this trial, some families will receive the standard-of-care approach to genetic testing with provider-based education, while others will also receive an educational video. Additionally, genetic testing, such as the UCSF 500 Cancer Gene Panel, can lead to treatments tailored to each child, providing more personalized care. Thus, an educational video may assist families in better understanding genetic testing and treatment options. ^{1 3 4}

Who Is on the Research Team?

Suzanne MacFarland, MD

Principal Investigator

Children's Hospital of Philadelphia

Are You a Good Fit for This Trial?

This trial is for children and adolescents aged 12 or older with a new diagnosis of cancer, tumors, or genetic disorders. Participants must be able to understand and speak English fluently without cognitive impairments that limit comprehension. It's also open to parents/legal guardians of these patients at the Children's Hospital of Philadelphia.

Inclusion Criteria

Ages 12+

Adolescent/Young Adult (AYA) probands: Child proband receiving germline testing in the Cancer Center at CHOP

Appropriate to approach per oncology team

Exclusion Criteria

You do not meet any of the requirements to be included in the study.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention Year 1

Families receive the current standard-of-care approach to tumor-normal genetic testing with provider-based education

1 year

Intervention Year 2

Families receive the updated standard-of-care approach with provider-based education and an educational video

1 year

Follow-up

Participants are monitored for knowledge score and acceptability of the video intervention

6 months

What Are the Treatments Tested in This Trial?

Interventions

• Educational Video for Genetic Testing

Trial Overview The study is testing an educational video designed to inform about paired tumor/normal genetic testing in young patients with cancer or other related diagnoses. The goal is to assess how acceptable, feasible, and effective this video is as a resource.

How Is the Trial Designed?

Group I: With Video Experimental Treatment 1 Intervention

In year 2, investigators will recruit families of patients receiving the updated standard-of-care approach to tumor-normal genetic testing with provider based education and an educational video.

Group II: Without Video Active Control 1 Intervention

In year 1, investigators will recruit families of patients receiving the current standard-of-care approach to tumor-normal genetic testing with provider based education.

Who Is Running the Clinical Trial?

Children's Hospital of Philadelphia

Lead Sponsor

Trials

749

Recruited

11,400,000+

National Human Genome Research Institute (NHGRI)

Collaborator

Trials

273

Recruited

299,000+

National Institutes of Health (NIH)

Collaborator

Trials

2,896

Recruited

8,053,000+

Citations

1. sciencedirect.com sciencedirect.com/science/article/abs/pii/S0738399119303581

Impact of patient education videos on genetic counseling ... Parents reported that educational videos were helpful in understanding genetics. Satisfaction with genetic counseling was equivalent for standard care and ...

2. withpower.com withpower.com/trial/phase-genetic-disease-8-2021-35b3b

Educational Video for Childhood Cancer · Info for Participants This trial aims to develop and test an informational video about genetic testing for children and adolescents newly diagnosed with cancer or tumors.

3. medconnection.ucsfbenioffchildrens.org medconnection.ucsfbenioffchildrens.org/videos/gene-testing-for-kids-with-cancer-details-and-benefits-of-the-precision-medicine-program

Gene Testing for Kids With Cancer: Details and Benefits of the ... The speakers detail the scope of the UCSF 500 Cancer Gene Panel and its real-life benefits – leading to targeted treatments and personalized monitoring.

4. elsihub.org elsihub.org/video/elsicon2022-paper-how-useful-genome-sequencing-parents-pediatric-cancer-patients-findings

ELSIcon2022 Paper: How useful is genome sequencing to ... ELSIcon2022 Paper: How useful is genome sequencing to parents of pediatric cancer patients? Findings from the Texas KidsCanSeq Study. Type.