Familial communication of pathogenic genetic variants is necessary to maximize the clinical utility of genetic testing and its public health benefits. Insights to family communication considerations may be obtained from existing clinical documentation available in medical records. The goal of this study was to describe and characterize information about family communication of pathogenic variants and cascade genetic testing from genetic counseling summary notes. We completed structured content analysis of 656 summary notes describing pathogenic variants in breast cancer genes, for patients seen at a tertiary cancer center. Patients were 89.5% female, median age of 49 years, 32.6% non-White, and were counseled by 23 unique genetic counselors (GCs) with mean post-certification experience of 3.7 years. Cascade genetic testing was documented in 92.2% of all notes. Specific relatives (i.e., relationship to patient) who would benefit from genetic counseling and cascade testing were referenced in 33.1% of notes. Specific risk messaging was 2.5 times more likely to be present in notes of high- compared to moderate-risk genes (OR=2.53, 95% CI: 1.71-3.80), and when summary notes indicated the presence of a friend or relative (OR=2.29, 95% CI: 1.50-3.48). Summary notes frequently attempted to contextualize the patients' familial relationships by referencing positive family communication patterns (41.6%) or negative communication issues (2.4%) and included various strategies to address barriers to communication and assist relatives with cascade testing. Overall, GCs consistently documented family communication recommendations when pathogenic variants are identified on patients' genetic testing, albeit with heterogeneous use of specific communication prompts.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8241970PMC
http://dx.doi.org/10.1007/s12687-021-00504-9DOI Listing

Publication Analysis

Top Keywords

family communication
20
pathogenic variants
16
genetic testing
16
summary notes
16
communication
9
genes patients
8
communication pathogenic
8
genetic
8
cascade genetic
8
genetic counseling
8

Similar Publications

Background: Persons with intellectual and/or developmental disabilities (IDD) are a growing population, frequently living with complex health conditions and unmet healthcare needs. Traditional clinical practice and research methods and measures may require adaptation to reflect their preferences.

Objective: The perspectives of people with IDD, caregivers/partners, and clinicians were obtained to provide insight into factors contributing to the health and wellness of people with IDD.

View Article and Find Full Text PDF

Social isolation as a determinant of mental health among hybrid employees in the United States.

J Affect Disord

January 2025

Center for Anti-racism, Social Justice & Public Health, New York University School of Global Public Health, New York, NY, USA; Department of Biostatistics, New York University School of Global Public Health, New York, NY, USA. Electronic address:

Background: A knowledge gap exists in understanding the role of social isolation as a determinant of mental health among hybrid employees during the COVID-19 era.

Methods: Using 2024 Household Pulse Survey data, we investigated the relationship between social isolation and mental health among US hybrid employees. We assessed depression symptoms using the Patient Health Questionnaire-2 and anxiety symptoms using the Generalized Anxiety Disorder-2.

View Article and Find Full Text PDF

Pediatric Dialysis: Ethical Dilemmas Faced by Pediatric Intensive Care Nurses.

Nephrol Nurs J

January 2025

Research Associate Professor of Biostatistics, Department of Biostatics and Computational Biology, University of Rochester Medical Center, Rochester, NY.

Whether pediatric dialysis is morally obligatory is an ethical issue. The study's aim was to understand neonatal and pediatric intensive care unit (ICU) nurses' beliefs regarding the ethical use of pediatric dialysis. A single center study was conducted using theoretical and case-based surveys.

View Article and Find Full Text PDF

Here we characterize seven Cx30.3 gene variants (R22H, S26Y, P61R, C86S, E99K, T130M and M190L) clinically associated with the rare skin disorder erythrokeratodermia variabilis et progressiva (EKVP) in tissue-relevant and differentiation-competent rat epidermal keratinocytes (REKs). We found that all variants, when expressed alone or together with wildtype (WT) Cx30.

View Article and Find Full Text PDF

Mapping the spatial atlas of the human bone tissue integrating spatial and single-cell transcriptomics.

Nucleic Acids Res

January 2025

Tulane Center for Biomedical Informatics and Genomics, Deming Department of Medicine, School of Medicine, Tulane University, 1440 Canal Street, Downtown, New Orleans, LA 70112, USA.

Bone is a multifaceted tissue requiring orchestrated interplays of diverse cells within specialized microenvironments. Although significant progress has been made in understanding cellular and molecular mechanisms of component cells of bone, revealing their spatial organization and interactions in native bone tissue microenvironment is crucial for advancing precision medicine, as they govern fundamental signaling pathways and functional dependencies among various bone cells. In this study, we present the first integrative high-resolution map of human bone and bone marrow, using spatial and single-cell transcriptomics profiling from femoral tissue.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!