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.
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 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
Children, adolescents, and young adults (CAYAs) aged 10-24 years with a pathogenic/likely pathogenic variant in a known cancer predisposition gene and their parents
Cohort
Prospective
Not listed
Behavior Observations
Multiple regression models will be conducted to assess whether demographic and clinical factors significantly relate to quality and style of observed communication variables, as assessed using the Iowa Family Interaction Rating Scales. Multiple regression models will also be conducted to investigate whether general family communication, parent adjustment, parent genetic knowledge, parent sense of efficacy, and perception of children as less vulnerable (as assessed by parent and CAYA reported measures) significantly relate to each of the five observed communication variables (observed distress, warmth/support, responsiveness, dismissiveness, and child-centeredness), as assessed using the Iowa Family Interaction Rating Scales.
Qualitative Interviews
Interview transcripts will be coded to identify barriers and facilitators of parent-CAYA communication regarding CAYA genomic risk for cancer. Interviews will undergo content and thematic analysis until saturation and consensus is reached. Themes will be compared between strata defined by degree of communication about cancer predisposition.
Multidimensional Impact of Cancer Risk Assessment (MICRA), modified
A linear regression will be conducted to assess differences between observed communication qualities (behavior observations: distress, warmth/support, responsiveness, dismissiveness, and child-centeredness) and CAYA-reported impact of genetic testing disclosure.
Patient-Reported Outcomes Measurement Information System (PROMIS): Pediatric Short Form v2.0 (age <17 years) and Short Form v1.0 (age 18+ years) - Anxiety 8a
A linear regression will be conducted to assess differences between observed communication qualities (behavior observations: distress, warmth/support, responsiveness, dismissiveness, and child-centeredness) and CAYA anxiety.
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