Information needs persist after genetic counseling and testing for BRCA1/2 and Lynch Syndrome.

PURPOSE: Research has shown that cancer genetic risk is often not well understood by patients undergoing genetic testing and counseling. We describe the barriers to understanding genetic risk and the needs of high-risk persons and cancer survivors who have undergone genetic testing. METHODS: Using data from an internet survey of adults living in the USA who responded 'yes' to having ever had a genetic test to determine cancer risk (N = 696), we conducted bivariate analyses and multivariable logistic regression models to evaluate associations between demographic, clinical, and communication-related variables by our key outcome of having vs. not having enough information about genetics and cancer to speak with family. Percentages for yes and no responses to queries about unmet informational needs were calculated. Patient satisfaction with counseling and percentage disclosure of genetic risk status to family were also calculated. RESULTS: We found that a lack of resources provided by provider to inform family members and a lack of materials provided along with genetic test results were strongly associated with not having enough information about genetics and cancer (OR 4.54 95% CI 2.40-8.59 and OR 2.19 95% CI 1.16-4.14 respectively). Among participants undergoing genetic counseling, almost half reported needing more information on what genetic risk means for them and their family and how genetic testing results might impact future screening. CONCLUSION: High levels of satisfaction with genetic counseling may not give a full picture of the patient-provider interaction and may miss potential unmet needs of the patient. Accessible resources and ongoing opportunities for updating family history information could reinforce knowledge about genetic risk.

Association of Children's Mode of School Instruction with Child and Parent Experiences and Well-Being During the COVID-19 Pandemic - COVID Experiences Survey, United States, October 8-November 13, 2020.

In March 2020, efforts to slow transmission of SARS-CoV-2, the virus that causes COVID-19, resulted in widespread closures of school buildings, shifts to virtual educational models, modifications to school-based services, and disruptions in the educational experiences of school-aged children. Changes in modes of instruction have presented psychosocial stressors to children and parents that can increase risks to mental health and well-being and might exacerbate educational and health disparities (1,2). CDC examined differences in child and parent experiences and indicators of well-being according to children's mode of school instruction (i.e., in-person only [in-person], virtual-only [virtual], or combined virtual and in-person [combined]) using data from the COVID Experiences nationwide survey. During October 8-November 13, 2020, parents or legal guardians (parents) of children aged 5-12 years were surveyed using the NORC at the University of Chicago AmeriSpeak panel,* a probability-based panel designed to be representative of the U.S. household population. Among 1,290 respondents with a child enrolled in public or private school, 45.7% reported that their child received virtual instruction, 30.9% in-person instruction, and 23.4% combined instruction. For 11 of 17 stress and well-being indicators concerning child mental health and physical activity and parental emotional distress, findings were worse for parents of children receiving virtual or combined instruction than were those for parents of children receiving in-person instruction. Children not receiving in-person instruction and their parents might experience increased risk for negative mental, emotional, or physical health outcomes and might need additional support to mitigate pandemic effects. Community-wide actions to reduce COVID-19 incidence and support mitigation strategies in schools are critically important to support students' return to in-person learning.

Alignment of parent-proxy report and teen self-report of adverse childhood experiences among U.S. teens.

PURPOSE: Data on adverse childhood experiences (ACEs) among teens is collected using a single informant, a parent-proxy, or teen self-report. Little is known about alignment between these approaches. METHODS: Surveys were administered online to teens ages 15-17 and their parents (n = 522 dyads) using the AmeriSpeak panel. We present descriptive statistics on the prevalence and measures agreement for 18 ACEs based on teen self-report and parent-proxy report. We fit multivariable models examining associations between teen and household demographic characteristics and discordance in ACE report. RESULTS: Based on teen-self report and parent-proxy report, cumulative and individual ACE prevalence was overall similar. However, discordance was found in individual ACE reports within teen-parent dyads (discordance ranged: 2.9-21.2 %). Lowest agreement was among ACEs related to abuse, neglect, and violence victimization and highest among household challenges. Furthermore, parent-teen dyads with LGB+ youth (vs. heterosexual) and Black, Hispanic, and multiracial or another race (vs. White) youth were more likely to have discordant responses among several ACEs. CONCLUSIONS: Surveillance and programmatic efforts should consider the type of ACE and the reporter when using data to inform prevention strategies. Teen self-report for abuse, neglect, and violence victimization and community challenges ACEs are particularly important to capture.

Youth-Serving Professionals' Perspectives on HIV Prevention Tools and Strategies Appropriate for Adolescent Gay and Bisexual Males and Transgender Youth.

INTRODUCTION: HIV disproportionally burdens adolescent men who have sex with men (AMSM) and transgender youth. This study explores barriers and facilitators that professionals face in delivering HIV preventive services and education. METHODS: Adolescent health providers (nurse practitioners, physicians, and other), school nurses, youth workers, and school educators were recruited nationally for this qualitative study. RESULTS: Thirty-four professionals participated. Common categories identified across professional group were (1) effective strategies for building trust with youth, (2) perceived barriers/facilitators to sexual health communication, (3) perceived barriers/facilitators to effective HIV prevention, and (4) preferred content for HIV prevention tools. DISCUSSION: Key elements for developing multidisciplinary resources to support AMSM and transgender youth should include (1) web-based or easily accessible sexual health educational materials, (2) resources for referrals, (3) trainings to support competence in caring for sexual and gender minority youth, and (4) guidance for navigating policies or eliciting policy change.

Improving Measures of Sexual and Gender Identity in English and Spanish to Identify LGBT Older Adults in Surveys.

PURPOSE: The goal of this research is to advance the study of health disparities faced by older sexual and gender minorities by assessing comprehension of and improving measures of sexual and gender identity in surveys. METHODS: Cognitive interviews were conducted by expert interviewers with 48 non-lesbian, gay, bisexual, and transgender (non-LGBT) and 9 LGBT older English and Spanish speakers. RESULTS: All respondents were able to answer questions about their sex assigned at birth and current gender identity successfully despite some cisgender respondents' lack of clear understanding of the transgender response option. On the contrary, while the vast majority of English speakers could answer the question about their sexual identity successfully, almost 60% of the non-LGBT Spanish speakers did not select the "heterosexual, that is, not gay (or lesbian)" response category. Qualitative probing of their response process pointed mainly to difficulties understanding the term "heterosexual," leading to their choosing "something else" or saying that they didn't know how to answer. A second round of testing of alternative response categories for the sexual identity question with Spanish speakers found a marked improvement when offered "not gay (or lesbian), that is, heterosexual" instead of beginning with the term "heterosexual." CONCLUSION: This research adds to our understanding of gender and sexual identity questions appropriate for population surveys with older adults. Inclusion of these measures in surveys is a crucial step in advancing insights into the needs of and disparities faced by LGBT older adults.