RecruitingNCT05849155

Barriers and Facilitators of Parent-Child Communication in Children With Cancer Predisposition

Sponsor

St. Jude Children's Research Hospital

Enrollment

125 participants

Start Date

Dec 12, 2023

Study Type

OBSERVATIONAL

Conditions

Genetic Predisposition

Summary

Testing children, adolescents, and young adults (CAYA) for a genetic risk for cancer can help with early prevention and detection of cancers through regular follow-ups and medical care. After receiving genetic test results, CAYA may not accurately understand what their results mean, and parents are often unsure about talking with their CAYA about their genetic risk for cancer. By understanding how parents communicate with their CAYA, the investigators can improve future genetic education to reduce cancer risk. Primary Objectives: * Identify qualities of parent-CAYA (child, adolescent, and young adults) communication about CAYAs' genomic cancer risk, and their association with CAYAs' psychosocial and prevention outcomes. * Examine the association between sociodemographic, cancer-related, and psychosocial factors and parent-CAYA communication regarding CAYAs' genomic risk for cancer. * Identify barriers and facilitators of parent-CAYA communication regarding CAYAs' genomic risk for cancer.

Eligibility

Min Age: 10 YearsMax Age: 24 Years

Inclusion Criteria5

Patient aged 10 to 24 years (inclusive)
Patient underwent germline genetic testing with a Pathogenic/Likely Pathogenic (P/LP) variant in a known cancer predisposition gene that increases risk for developing cancer
P/LP result disclosed to the patient
Patient has a primary caregiver willing to participate
Patient and participating caregiver able to speak and read English

Exclusion Criteria5

Patient is only a carrier of a recessive variant that does not alone increase risk for cancer
Inability or unwillingness of patient or participating caregiver or to give informed consent/assent
Participating caregiver is under the age of 18 years
Patient or participating caregiver has evidence of significant cognitive deficits (per medical record) that would interfere with the ability to comprehend study questions
Patient's medical status or condition precludes completion of study (as determined by medical team, patient, or parent)

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