Differential Cortical Volume and Surface Morphometry in Youth With Chronic Health Conditions.

Up to 1 in 3 youth in the United States have a childhood-onset chronic health condition (CHC), which can lead to neurodevelopmental disruptions in cognitive functioning and brain structure. However, the nature and extent of structural neurobiomarkers that may be consistent across a broad spectrum of CHCs are unknown. Thus, the purpose of this study was to identify potential differences in brain structure in youth with and without chronic physical health conditions (e.g., diabetes, hemophilia). Here, 49 T1 structural magnetic resonance imaging (MRI) images were obtained from youth with (n = 26) and without (n = 23) CHCs. Images were preprocessed using voxel-based morphometry (VBM) to generate whole-brain voxel-wise gray matter volume maps and whole-brain extracted estimates of cortical surface area and cortical thickness. Multi-scanner harmonization was implemented on surface-based estimates and linear models were used to estimate significant main effects of the group. We detected widespread decreases in brain structure in youth with CHCs as compared to controls in regions of the prefrontal, cingulate, and visual association areas. The insula exhibited the opposite effect, with cases having increased surface area as compared to controls. To our knowledge, these findings identify a novel structural biomarker of childhood-onset CHCs, with consistent alterations identified in gray matter of regions in the prefrontal cortex and insula involved in emotion regulation and executive function. These findings, while exploratory, may reflect an impact of chronic health stress in the adolescent brain, and suggest that more comprehensive assessment of stress and neurodevelopment in youth with CHCs may be appropriate.

Self-identified culturally related stressors that influence self-care in older adults with multiple chronic conditions: A qualitative study.

AIM: To identify culturally related stressors that influence self-care in Chinese older adults with multiple chronic conditions. BACKGROUND: Effective self-care can improve health outcomes for chronic conditions, but implementing self-care is challenging. Individuals with multiple chronic conditions face even more self-care complexity than those with single chronic conditions, generating additional stressors. Although stressors have been found to negatively influence self-care in multiple chronic conditions, the role of culture in generating stressors has been neglected. DESIGN: This paper reports on the qualitative component of a larger mixed-methods study. Two free-response items in a survey were used to identify culturally related stressors that influence self-care. This report adhered to the SRQR guideline checklist. METHODS: Data were collected between January and April 2022. One hundred and thirty-eight free text responses asking participants to identify stressors that influenced their self-care effectiveness were analysed sequentially using deductive content analysis and thematic analysis. RESULTS: Findings from deductive content analysis largely confirmed published work in Western literature on stressors complicating self-care, including symptom burdens, financial strains, social disconnection, caregiving responsibilities and major life events. Findings from reflexive thematic analysis extended current literature by identifying three culturally relevant stressors: intergenerational obligations and commitments, ambivalence about receiving care and worries about potential problems. CONCLUSION: Chinese older adults with multiple chronic conditions identified a wide range of stressors that impacted their day-to-day self-care. This study provided valuable insights into culturally related stressors in older adults with multiple chronic conditions. Findings deepened our knowledge of cultural influences on the success of self-care in older adults with multiple chronic conditions, suggesting the potential for reaching populations across different cultures and regions. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Stressors that might influence self-care ability are important for nurses to assess in people with multiple chronic conditions. The design of self-care interventions should take a culturally tailored intergenerational family-centred approach to help mitigate the impact of stressors and ultimately improve patient outcomes. IMPACT: What problem did the study address? Stressors documented in older adults with MCCs have all been generated from research with Western populations. China is now home to the largest population of older people in the world. Understanding the influence of culturally relevant stressors on self-care in Chinese older adults with MCCs is lacking. What were the main findings? Findings from deductive content analysis largely confirmed published work in Western literature on stressors that complicated self-care, including symptom burdens, financial strains, social disconnection, caregiving responsibilities and major life events. Findings from reflexive thematic analysis extended current literature by identifying three culturally relevant stressors in older adults with MCCs in China: intergenerational obligations and commitments, ambivalence about receiving care and worries about potential problems. Where and on whom will the research have an impact? The research will have an impact on guiding nurses' assessment of culturally relevant stressors' impact on self-care for older adults with MCCs. In addition, findings could inform research and policy development to aim at mitigating the impact of culturally based stressors on self-care. REPORTING METHOD: This study adhered to the Standards for Reporting Qualitative Research (SRQR) guideline checklist. PATIENT OR PUBLIC CONTRIBUTION: During the member-checking process, the validation of findings for accuracy was carried out by 10 participants, who also found resonance between these findings and their own experiences.

Pathways and processes to the embodiment of historical trauma secondary to settler colonialism.

AIM(S): This discursive article aims to examine how systemic factors of settler colonialism influence health outcomes among Indigenous peoples in the United States through pathways and processes that may lead to the embodiment of historical trauma. DESIGN: Discursive paper. METHODS: We completed a comprehensive search of empirical and grey literature between September 2022 and January 2023 in PubMed, CINAHL and Google Scholar. Using these articles as a foundation, we explored factors related to the pathways and processes leading to the embodiment of historical trauma rooted in settler colonialism. RESULTS: A conceptual framework of the pathways and processes of the embodiment of historical trauma secondary to settler colonialism was developed, and is presented. CONCLUSION: The societal and historical context for Indigenous peoples includes harmful settler colonial structures and ideologies, resulting in stressors and historical trauma that impact health outcomes and disparities through the phenomenon of the process of embodiment. IMPLICATIONS FOR NURSING: To provide holistic nursing care, nurses must be aware of settler colonialism as a determinant of health. They must be attuned to the pathways and processes through which settler colonial exposures may impact health among Indigenous peoples. Nurses must challenge existing structural inequities to advance health equity and social justice.

Fathers' Experiences of Caring for a Child with a Chronic Illness: A Systematic Review.

The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers' experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers' experience, perceptions, and/or involvement in the child's care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father's Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers' experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.

Association between stressful life events and non-optimal lipid levels among women with hyperlipidaemia.

AIMS: Psychological stress has been linked to lipid dysregulation with noticeable gender differences, but it remains unclear whether women are more susceptible to non-optimal lipid levels than men, when experiencing stressful life events. This study aims to examine the association between stressful life events and non-optimal lipid levels among persons with hyperlipidaemia and whether the association differs between men and women. METHODS AND RESULTS: A nested case-control study was performed using data from the Wisconsin Sleep Cohort (WSC) Study from 2011 to 2015, including 224 participants with hyperlipidaemia and without a history of myocardial infarction or heart failure. Among them, 63 participants with non-optimal LDL cholesterol or triglyceride levels were identified as cases, and 161 participants with optimal LDL cholesterol and triglyceride levels were identified as controls. Cases and controls were traced back to their self-reported life events collected through the Retirement and Sleep Trajectories study during 2010-11. The association between stressful life events and non-optimal lipid levels was examined using multivariable logistic regression; confounding effects were addressed using propensity score weighting and Mahalanobis distance matching; gender differences were examined using subgroup analysis. Results showed that a higher number of stressful life events during 2010-11 was associated with greater odds of non-optimal lipid levels during 2011-15 (odds ratio = 1.45, P = 0.03) among women with hyperlipidaemia, whereas the association was not significant among men with hyperlipidaemia (P = 0.910). CONCLUSION: Future studies are needed to examine the underlying mechanisms that explain gender differences in the association between stressful life events and non-optimal lipid levels. REGISTRATION: ClinicalTrials.gov NCT00005557.

Linking chronic stress to insomnia symptoms in older adults: The role of stress co-occurrence during the pandemic.

Studies examining the associations of chronic stressors with sleep health in older adults have shown conflicting results. While the COVID-19 pandemic increased perceived stress at the population level, less is known about chronic stressors experienced by older adults in the context of the COVID-19 pandemic and its impact on sleep health in an aging population. This study aims to examine the association of older adults' chronic stress with insomnia symptoms during the first year of the COVID-19 pandemic. A cross-sectional analysis was performed using early-release COVID-19 data from the Health and Retirement Study. Data on chronic stressors and insomnia symptoms in older adults (N = 2021; mean age = 68.8) were examined. Co-occurrence network analysis, latent class analysis, Rao-Scott χ2 tests, and multivariable logistic regression were used to characterize the co-occurrence of chronic stressors and associations with insomnia symptoms. The most common co-occurring chronic stressors during the first year of the COVID-19 pandemic were self-health issues, family-health issues, and financial stress. Older adults experiencing frequent stress co-occurrence had 91% higher odds of difficulty initiating sleep (p < 0.001), 40% higher odds of frequent nocturnal awakening (p = 0.028), and 83% higher odds of nonrestorative sleep (p < 0.001). However, adjustment for health risk factors and COVID-19 concerns attenuated the effects, leaving strongest association for difficulty initiating sleep (odds ratio = 1.51, p = 0.010). Frequent stress co-occurrence plays an important role linking chronic stress to insomnia symptoms in an aging population. Ongoing research is needed to examine the lingering effects of frequent stress co-occurrence on older adults' sleep health in the post COVID-19 era.

Genetic Variation, Stress, and Physiological Stress Response in Adults With Food Allergy or Celiac Disease.

BACKGROUND: Persistently high chronic stress can lead to maladaptive psychological, behavioral, and physiological stress responses and poor mental and physical health, highlighting the importance of identifying individuals at increased risk. Chronic health condition diagnosis and genetics are 2 characteristics that can influence stress, stress response, and health outcomes. PURPOSE: Food allergy (FA) and celiac disease (CD) require constant vigilance in daily life and can lead to increased stress. The purpose of this exploratory analysis was to examine the association of variants in selected stress-related genes with stress exposures, stress, clinical measures of physiological stress response, and mental health symptoms in adults with and without FA or CD. METHODS: We compared stress exposures, symptoms of PTSD, depression, anxiety, and stress, BMI, and waist-hip ratio between cases and controls. We analyzed the association of SNPs in genes with known or hypothesized associations with stress-related measures in 124 cases and 124 matched controls: CRHBP (rs7718461, rs10474485), CRHR1 (rs242940) and OXTR (rs2268490). For this exploratory study, p-values ≤ 0.10 were considered suggestive. RESULTS: For cases and controls, rs7718461 was associated with stress symptoms, rs2268490 with symptoms of stress and PTSD, and rs242940 with symptoms of stress, PTSD, anxiety, and depression. Further analyses found that stress-related outcomes in individuals with FA or CD may be influenced by SNP genotype. CONCLUSIONS: Given these suggestive findings, larger prospective studies should examine similar relationships in individuals with other chronic health conditions, incorporating factors such as environmental exposures, individual experiences, and epigenetic modifications.

Variability in qualifications for principal investigator status in research studies by nurses: A call for clarification.

PURPOSE: To describe existing guidance for qualifications of principal investigator s (PI s) of human subjects research and explore how they are operationalized for pediatric nurse scientists and clinical nurses in children's hospitals. DESIGN AND METHODS: After reviewing federal regulations, accreditation guidelines, and the literature, a convenience sample of members of the National Pediatric Nurse Scientist Collaborative (NPNSC). Participants completed a 33-item survey that included questions about Institutional Review Board (IRB), guidelines, and policies for PI status at their affiliated children's hospitals. RESULTS: The survey was electronically disseminated to 179 members of NPNSC through the Collaborative's listserv. Of the 39 members who responded, 90% hold a PhD and 80% practice in a free-standing children's hospital, nearly all of which (93%) are recognized as Magnet® hospitals. While the majority of respondents indicated that nurse scientists and other nurses were allowed to be PIs of research studies, educational requirements for PI status varied, with 3% requiring a PhD, 15% a baccalaureate degree, and 10% a graduate degree. 54% of respondents reported there was no degree requirement for PI status; however15% reported that even doctorally prepared nurse scientists cannot serve as PIs of research studies at their affiliated children''s hospitals. CONCLUSIONS: The survey identified substantial variability in requirements for PI status and potential barriers to pediatric nurses conducting independent research as PIs at children's hospitals. PRACTICE IMPLICATIONS: Operationalizing existing guidance will expand inclusion of nurse scientist expertise in human subjects research.

Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis.

Genomic advances have contributed to a proliferation of newborn screening (NBS) programs. Psychosocial consequences of NBS have been identified as risks to these public health initiatives. Following PRISMA guidelines, this systematic review synthesizes findings from 92 evidence-based, peer-reviewed research reports published from 2000 through 2020 regarding psychosocial issues associated with NBS. Results describe parents' knowledge of and attitudes towards NBS, reactions to and understanding of positive NBS results, experiences of communication with health providers, decisions about carrier testing, and future pregnancies. Findings also explain the impact of positive NBS results on parent-child relationships, child development, informing children about carrier status, family burden, quality of life, and disparities. In conclusion, psychosocial consequences of receiving unexpected neonatal screening results and unsolicited genetic information remain significant risks to expansion of NBS. Findings suggest that risks may be mitigated by improved parent NBS education, effective communication, individualized genetic counseling, and anticipatory developmental guidance. Clinicians need to take extra measures to ensure equitable service delivery to marginalized subpopulations. Future investigations should be more inclusive of culturally and socioeconomically diverse families and conducted in low-resource countries. Providing these countries with adequate resources to develop NBS programs is an essential step towards achieving international health equity.

Association Between Food Allergy, Psychological Stress, and Allostatic Load.

Allostatic load (AL), the cumulative biological burden of persistently high stress exposure, influences adult health and well-being across the lifespan, and can be measured with clinical indicators, such as BMI, blood pressure (BP), and waist-hip ratio. Adverse childhood events and other stressors contribute to AL, but stress from other sources, such as previously diagnosed chronic health conditions, has been overlooked. We hypothesized that adults with these conditions would have more stress exposures, higher perceived stress, worse mental health, and higher AL, compared to controls. A secondary analysis of deidentified data from cases with self-reported food allergies and controls found that individuals with chronic health conditions reported more stress exposures, higher levels of perceived stress, and had higher AL, compared to controls. However, other results did not support the study hypotheses. Future studies should examine additional AL measures, such as biomarkers of stress response, in individuals with existing chronic health conditions.

Clinical Measures of Allostatic Load in Children and Adolescents with Food Allergy, Depression, or Anxiety.

PURPOSE: Sustained high stress exposure results in chronic activation of the stress response system, dysregulated stress responses, high allostatic load, and poor later-life health. Children and adolescents with chronic health conditions face stressors related to their condition in addition to those typical of childhood and adolescence, placing them at risk of high allostatic load. The purpose of this secondary analysis was to examine whether youth with chronic health conditions differ from controls on clinical measures of allostatic load. DESIGN AND METHODS: A secondary analysis of two datasets, the electronic health record of a tertiary children's hospital and data from the Survey of the Health of Wisconsin, compared youth with chronic health conditions to controls on clinical measures of allostatic load. Additional analyses explored whether parental stress and mental health influenced these relationships. RESULTS: Analyses identified differences in BMI, blood pressure, and waist circumference between youth with food allergy, anxiety, or depression, and controls. These relationships differed for males and females and for those with comorbid mental and physical conditions, and were influenced by parent stress and mental health. CONCLUSIONS: Results support future studies exploring whether high stress in youth with chronic health conditions leads to increased allostatic load. Incorporating biomarkers as well as genetic and epigenetic factors will provide critical insights. PRACTICE IMPLICATIONS: Youth with mental and physical CHCs may be at increased risk of high allostatic load, reflected in clinical measures of metabolism, and should have regular assessments of their metabolic health.

Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity.

PURPOSE: The purpose of this study was to obtain feedback on communication, care coordination, and transitions in care for hospitalized children with medical complexity (CMC). DESIGN AND METHODS: This descriptive, mixed-methods study used online surveys with forced-choice and open-ended questions to obtain stakeholder feedback. Stakeholders included parents, healthcare providers, and nurses. Participants over 18 years of age were recruited from a Midwest children's hospital inpatient unit dedicated to care of CMC. Quantitative data were analyzed using t-tests and one-way analysis of variance. Qualitative description was used to analyze responses to open-ended questions. RESULTS: Parents' ratings of communication, care coordination, and transitions in care were generally high. Transitions from other facilities to the emergency department and unit received lower ratings. Providers and nurses gave high ratings to overall care, communication among providers and nurses on the patient unit, and experiences with discharge; however, between unit communication and unit-based coordination received lower ratings. Providers and nurses had higher ratings for discharge preparation than parents (p ≤ .001). Three themes were identified in responses to the open-ended questions: establishing balanced and collaborative relationships between the care team and families, taking a proactive approach to care coordination, and the importance of an inclusive, interdisciplinary, and centralized approach to care coordination and communication. PRACTICE IMPLICATIONS: Collaboration among all stakeholders is needed to achieve coordinated care, inclusive communication, and transitions with positive outcomes during hospitalization. Parents identified a need for consistent communication from care teams, with the primary inpatient team taking a lead role. Including parents in care coordination and transitions in care is key, as they are the experts in their children's health and well-being.

Correction to: Does 24-h Activity Cycle Influence Plasma PCSK9 Concentration? A Systematic Review and Meta-Analysis.

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Does 24-h Activity Cycle Influence Plasma PCSK9 Concentration? A Systematic Review and Meta-Analysis.

PURPOSE OF REVIEW: Higher plasma proprotein convertase subtilisin/kexin type 9 (PCSK9) concentration has been associated with a higher risk of atherosclerotic cardiovascular disease (ASCVD). Animal and human studies have examined the relationship between 24-h activity cycles (24-HAC) and PCSK9, but conflicting results exist. Therefore, this review aimed to examine the relationship between 24-HAC and plasma PCSK9 concentration in animals and humans.Three databases (PubMed, CINAHL, and Web of Science) were searched for eligible articles. Descriptive data were summarized using network meta-analysis. The effect size was estimated using pairwise meta-analysis. RECENT FINDINGS: The interventions designed to increase moderate to vigorous physical activities (MVPA) did not significantly change plasma PCSK9 concentration (Hedges' g = 0.137; p = 0.337). However, the effect was influenced by statin therapy and intervention delivery mode. Specifically, physical activity interventions in conjunction with statin therapy significantly increased plasma PCSK9 concentration (Hedges' g = 0.275; p = 0.007). Supervised exercise training significantly increased plasma PCSK9 concentration (Hedges' g = 0.630; p = 0.001), but physical activity counseling did not (p = 0.845). The effects of MVPA on plasma PCSK9 may be moderated by statin therapy, intervention delivery mode, or other potential unknown mechanistic factors. Thus, caution should be taken when using plasma PCSK9 as an outcome indicator for physical activity interventions aimed at decreasing the risk of ASCVD. Graphical abstract.

Deconstructing Pain Disability through Concept Analysis.

OBJECTIVE: Pain disability is a complex and challenging problem that impacts the daily lives of individuals living with persistent pain. Although this concept is measured throughout pain populations, conceptual clarity is needed to identify the defining characteristics and further understand what comprises this experience for clinical translation. DESIGN: We completed a concept analysis to identify major attributes and provide a broad framework of pain disability for improved recognition throughout the discipline of nursing. DATA SOURCES: Literature searches in PubMed, CINAHL, PsychINFO, and Scopus identified 39 relevant cross-disciplinary articles published between January 1990 and November 2017. REVIEW/ANALYSIS METHODS: We implemented Avant and Walker's method of concept analysis to establish the attributes, antecedents, and consequences of pain disability. RESULTS: Two major attributes of pain disability are discussed, including (1) physical and/or psychological responses leading to a functional loss; and (2) the degree of ability to fulfill role expectations. The antecedent to the development of pain disability is a painful trigger. Three leading consequences are identified as suffering, pain reactivity, and secondary loss. CONCLUSIONS: Pain disability is a fluid concept that is characterized by the subjective experiences of the individual. A new conceptualization of pain disability is offered as the inability to maintain role expectations due to the result of a painful trigger and subsequent physical and/or psychosocial dysfunction.

Social Network Factors and Anxiety Among Adolescents With Type 1 Diabetes and Their Parents.

Stressors generated by chronic illnesses in adolescents are experienced in the broader social context of their lives. The purpose of this study was to examine the social networks of 15 adolescents with type 1 diabetes and 25 parents and evaluate associations of social support and kinship type with state and trait anxiety. Social network data were collected through individual interviews. Participants completed self-reported measures of anxiety. Adolescents with lower anxiety had greater overlap with their parents' networks and more network members with whom they would not share their feelings. Parents with increased anxiety had more network members who provide support for everyday stressors, or with whom they lose their temper. The type of support provided by biological and social kin differed for adolescents versus parents. Tailored interventions leveraging existing social networks could be a key mechanism for supporting family responses to stress-provoking situations in the context of childhood chronic illness.

An Exploratory Study: Transition to Adulthood for College Students with Type 1 Diabetes and Their Parents.

PURPOSE: The transition to college and adulthood can be challenging for young adults with chronic health conditions and their parents. Few studies have simultaneously explored the experiences of college students and their parents during the transition to college. The purpose of this study was to explore the transition to adulthood for college students with type 1 diabetes (T1D) and their parents. DESIGN AND METHODS: A descriptive exploratory study was conducted with college students with T1D and their parents. Data were collected online using quantitative surveys and open-ended questions. Descriptive statistics were generated for quantitative measures. Analysis of responses to open-ended questions used qualitative description. RESULTS: College students (18-24 years) and parents described challenges with life-stage stress, diabetes management worries, and concern about T1D-related long-term complications. Respondents also described the critical role of the college peer network for support and help in case of crisis situations. Students reported stress related to uncertainty in diabetes management, while parents described constant worry about their child's diabetes. CONCLUSIONS: Findings support the importance of assessing anticipated and current stressors of college students with T1D and other chronic health conditions and their parents during and after transition to college. PRACTICE IMPLICATIONS: Nurses can support students and parents by providing anticipatory guidance about the transition to college. Assistance identifying established sources of support on college campuses, as well as planning for potential crisis situations, may help reduce stress experienced by students and parents.

Genetic Variants and the Cortisol Response in Children: An Exploratory Study.

OBJECTIVE: We examined genomic variation potentially associated with the cortisol stress response in children having a painful medical procedure. DESIGN: Children 4-10 years old having a peripheral intravenous line inserted provided saliva samples for evaluation of the cortisol response as a biological measure of distress: two on the day of the procedure and two at home on a nonstressful day for comparison values. Children and biological parents also provided samples for genotyping of variants with known or suspected association with the cortisol stress response. Analysis included child-only association and family-based transmission disequilibrium tests (TDTs). RESULTS: Genotype and phenotype data on the cortisol stress response were available from 326 children for child-only association analyses and 376 complete family trios for TDTs. Children were 50% female, an average of 7.5 years old, and mostly (83%) White/non-Hispanic. We identified four single-nucleotide polymorphisms (SNPs) potentially associated with the cortisol stress response: rs1176744 ( HTR3B), rs10062367 ( CRHBP), rs634479 ( OPRM1), and rs8030107 ( NTRK3). Family-based analysis identified a two-SNP haplotype in HTR1B suggestive for association with the cortisol response (rs6296, rs11568817). Allelic TDTs identified rs7897947 ( NFKB2) as potentially related to cortisol response. CONCLUSIONS: Findings provide preliminary evidence for genes potentially important in cortisol response to an acute stressor in children in the serotonin, dopamine, and brain-derived neurotrophic factor pathways, the hypothalamic-pituitary-adrenal axis, and the inflammatory response. Combined with analyses of related phenotypes and clinical data, these results could help identify patients at increased risk of adverse responses to painful medical procedures who might benefit from tailored interventions.

Family Relationships Associated With Communication and Testing for Inherited Cardiac Conditions.

The purpose of this study was to identify characteristics of family relationships associated with communication of genetic risk and testing behaviors among at-risk relatives in families with an inherited cardiac condition. Data were collected from 53 patients and parents of children with an inherited cardiac condition through interviews, pedigrees, and surveys. Associations were examined among family relationship characteristics and whether at-risk relatives were informed about their risk and tested for disease. Of 1,178 at-risk relatives, 52.5% were informed about their risk and 52.1% of those informed were tested. Emotional closeness, relationship quality, and communication frequency had significant bivariate associations with genetic risk communication. Communication frequency was associated with genetic risk communication and testing in multivariate models. This study provides new insight into the extent of genetic risk communication and testing in families with inherited cardiac conditions. Family relationships, especially communication frequency, are critical factors in family communication of genetic risk.