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Exploring How to Adapt an Evidence-Based Mindful Self-Compassion Program for Young Adults With Li-Fraumeni Syndrome

Description

Background: Li-Fraumeni syndrome (LFS) is a genetic disorder that increases the risk of cancer. People who have LFS are 24 times more likely to develop cancer than those who do not. Past research studies have shown that living with high cancer risk can cause distress in young adults with LFS. Mindful self-compassion (MSC) is a therapeutic resource that has helped people with and without cancer cope with distress and other mental health challenges. Researchers at the National Cancer Institute (NCI) want to know if an MSC program can be adapted for young adults with LFS. Objective: Demonstrate and get feedback on an MSC resource for young adults with LFS. Eligibility: Young adults aged 18 to 29 years with LFS who have not participated in an MSC program in the past 6 months and who do not participate in daily meditation for 30 minutes or more. Individuals must be willing to travel to the National Cancer Institute for a one-day demonstration. Design: Participants will answer a short online questionnaire to determine study eligibility, which may include questions about cancer history and mental health. Eligible participants will attend an in-person demonstration of the MSC resource. A small group of other people, such as health care providers, may also attend. Participants will be invited to give their feedback on the MSC resource and discuss how to make it relevant and helpful for young adults with LFS. The demonstration will be held at the NCI campus in Rockville, Maryland. If the demonstration cannot be held in person, it will be conducted virtually. The total time to participate will be about 5.5 hours.

Conditions

Li-Fraumeni Syndrome
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Related Conditions:

Li-Fraumeni Syndrome

Study Overview

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Study Details

Study overview

Background: Li-Fraumeni syndrome (LFS) is a genetic disorder that increases the risk of cancer. People who have LFS are 24 times more likely to develop cancer than those who do not. Past research studies have shown that living with high cancer risk can cause distress in young adults with LFS. Mindful self-compassion (MSC) is a therapeutic resource that has helped people with and without cancer cope with distress and other mental health challenges. Researchers at the National Cancer Institute (NCI) want to know if an MSC program can be adapted for young adults with LFS. Objective: Demonstrate and get feedback on an MSC resource for young adults with LFS. Eligibility: Young adults aged 18 to 29 years with LFS who have not participated in an MSC program in the past 6 months and who do not participate in daily meditation for 30 minutes or more. Individuals must be willing to travel to the National Cancer Institute for a one-day demonstration. Design: Participants will answer a short online questionnaire to determine study eligibility, which may include questions about cancer history and mental health. Eligible participants will attend an in-person demonstration of the MSC resource. A small group of other people, such as health care providers, may also attend. Participants will be invited to give their feedback on the MSC resource and discuss how to make it relevant and helpful for young adults with LFS. The demonstration will be held at the NCI campus in Rockville, Maryland. If the demonstration cannot be held in person, it will be conducted virtually. The total time to participate will be about 5.5 hours.

Exploring How to Adapt an Evidence-Based Mindful Self-Compassion Program for Young Adults With Li-Fraumeni Syndrome

Exploring How to Adapt an Evidence-Based Mindful Self-Compassion Program for Young Adults With Li-Fraumeni Syndrome

Condition
Li-Fraumeni Syndrome
Intervention / Treatment

-

Contacts and Locations

Rockville

NCI Shady Grove Campus, Rockville, Maryland, United States, 20850

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Self-reported diagnosis of LFS.
  • * Aged 18 to 29 years at the time of enrollment.
  • * Ability to speak, read, and/or write in English (to understand and provide informed consent and participate in the study activities).
  • * Currently live in the U.S.
  • * Willing to engage in a demonstration of a mental health resource for YAs with LFS and provide feedback on it.
  • * Able to travel to the NCI Shady Grove Campus.
  • * Access to a computer, high-speed internet, and a webcam, which may be necessary if the study team cannot conduct the study at the NCI due to unforeseen circumstances (e.g., government policy, weather).
  • * Have not participated in a mindfulness- or compassion-based program within the past 6 months.
  • * Do not have a consistent meditation practice \>= 30 minutes per day.
  • * At least age 18 at the time of enrollment.
  • * Ability to speak, read, and/or write in English (to understand and provide informed consent and participate in the study activities).
  • * Currently live in the U.S.
  • * Willing to observe a demonstration of a mental health resource for YAs with LFS and provide feedback on it.
  • * Able to travel to the NCI Shady Grove Campus.
  • * Access to a computer, high-speed internet, and a webcam, which may be necessary if the study team cannot conduct the study at the NCI due to unforeseen circumstances (e.g., government policy, weather).
  • * A Patient Health Questionnaire (PHQ-9) score or a General Anxiety Disorder (GAD-7) score \>= 15 at the time of screening. Scores \>= 15 correspond to moderately severe or severe depression and severe anxiety, respectively. The PHQ-9 and GAD-7 are standardized, validated measures of depression and anxiety. The data obtained from participants who are determined to be ineligible will not be retained in the database or system. Instead, it will be destroyed to ensure the privacy and confidentiality of the participants.
  • * Individuals who do not meet eligibility criteria listed.

Ages Eligible for Study

18 Years to 29 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

National Cancer Institute (NCI),

Payal P Khincha, M.D., PRINCIPAL_INVESTIGATOR, National Cancer Institute (NCI)

Study Record Dates

2026-06-16