Racial Disparities in Mental Health Disorders in Youth with Chronic Medical Conditions.

OBJECTIVE: To evaluate the association between race/ethnicity, poverty, and mental health in youth with chronic conditions. STUDY DESIGN: A cross-sectional comparative study was performed using the records of a tertiary care center from 2011 to 2015. INCLUSION CRITERIA: children aged 4-17 years with ≥1 hospitalization or emergency department visit. Exclusion criteria were those with arrhythmias or treatment with clonidine/benzodiazepines. The primary outcome variable was diagnosis or medication for anxiety, depression, or attention deficit hyperactivity disorder. The primary predictor variable was diagnosis of cystic fibrosis (CF), sickle cell disease (SCD), or congenital heart disease (CHD). RESULTS: We identified 112 313 patients, 0.2% with CF, 0.4% with SCD, and 1.0% with CHD. Patients with CF had the highest prevalence (23%) and odds (OR, 4.21; 95% CI, 3.07-5.77) of anxiety or depression, whereas patients with SCD had the lowest prevalence (7%) and odds (OR, 1.54; 95% CI, 1.11-2.14). Those with CHD had a prevalence of up to 17%, with 3-4 times higher odds of anxiety or depression (OR, 3.70; 95% CI, 2.98-4.61). All non-White participants were less likely to be diagnosed or treated for anxiety or depression and attention deficit hyperactivity disorder. Although poverty increased the probability of anxiety or depression in patients with CHD, this finding was not seen in patients with CF or SCD. CONCLUSIONS: Children with CF, SCD, and CHD are at increased risk of anxiety or depression; however non-White patients are likely being underdiagnosed and undertreated. Increased screening and recognition in minority children are needed to decrease disparities in mental health outcomes.

Decreased Quality of Life in Children With Anomalous Aortic Origin of a Coronary Artery.

BACKGROUND: Anomalous aortic origin of a coronary artery (AAOCA) is associated with sudden death in the young. We sought to determine quality of life (QOL) in patients/families affected by AAOCA. METHODS: Patients with AAOCA (8-18 years) were prospectively included from January 2016 to May 2017. Parent proxy and patient Pediatric Cardiac Quality of Life Inventory (PCQLI) were used to evaluate QOL and Pediatric Quality of Life Inventory (PedsQL) Family Impact Module to assess the impact of AAOCA on families, as primary outcomes. Secondary outcomes included peer relationship, anxiety, and depression assessed using patient-reported outcomes measurement information system. Patients deemed high-risk were offered surgery/exercise restriction. Generalized linear mixed regression models were used to determine significant predictors of outcomes. RESULTS: Fifty-three patients, the majority (n = 31, 59%) unrepaired, and 49 caregivers were included. Using PCQLI, patient and parent proxy QOL scores were similar to published scores for children with long-QT syndrome. Patients' QOL score was associated with exertional symptoms, perceived chronic disease, and altered parent's concentration ability. Likewise, parent proxy QOL scores were associated with mother's living situation, exertional symptoms, parent missing work for ≥1 day, and disturbed parental functioning at work. Family impact scores were associated with lower maternal education, among other measures. Risk categories or surgical status did not impact patient, parent proxy reported, or family impact QOL. CONCLUSION: Anomalous aortic origin of a coronary artery is associated with decreased QOL as perceived by patients and caregiver and is associated with numerous facets of family functioning. These findings are independent of risk categorization or surgical status.

Mental Health Disorders in Children With Congenital Heart Disease.

BACKGROUND: Data on anxiety, depression, and attention-deficit/hyperactivity disorder (ADHD) are lacking for youth with congenital heart disease (CHD), particularly those with simple CHD. This study aims to characterize these disorders in youth with CHD compared to those without CHD. METHODS: A comparative cross-sectional study was conducted by using the electronic medical records of a large tertiary care hospital between 2011 and 2016. Inclusion criteria were youth aged 4 to 17 years with >1 hospitalization or emergency department visits. Exclusion criteria were patients with arrhythmias or treatment with clonidine and/or benzodiazepines. The primary predictor variable was CHD type: simple, complex nonsingle ventricle, and complex single ventricle. The primary outcome variable was a diagnosis and/or medication for anxiety and/or depression or ADHD. Data were analyzed by using logistic regression (Stata v15; Stata Corp, College Station, TX). RESULTS: We identified 118 785 patients, 1164 with CHD. Overall, 18.2% (n = 212) of patients with CHD had a diagnosis or medication for anxiety or depression, compared with 5.2% (n = 6088) of those without CHD. All youth with CHD had significantly higher odds of anxiety and/or depression or ADHD. Children aged 4 to 9 years with simple CHD had ∼5 times higher odds (odds ratio: 5.23; 95% confidence interval: 3.87-7.07) and those with complex single ventricle CHD had ∼7 times higher odds (odds ratio: 7.46; 95% confidence interval: 3.70-15.07) of diagnosis or treatment for anxiety and/or depression. Minority and uninsured youth were significantly less likely to be diagnosed or treated for anxiety and/or depression or ADHD, regardless of disease severity. CONCLUSIONS: Youth with CHD of all severities have significantly higher odds of anxiety and/or depression and ADHD compared to those without CHD. Screening for these conditions should be considered in all patients with CHD.

Health-Related Quality of Life in Pediatric Patients With Demyelinating Diseases: Relevance of Disability, Relapsing Presentation, and Fatigue.

Objective: Decreased health-related quality of life (HRQOL) in pediatric patients with multiple sclerosis is established, but little research has examined HRQOL in the broader pediatric demyelinating disease population, and predictors of reduced HRQOL are largely unexplored. We sought to (1) compare generic HRQOL and fatigue of pediatric patients with relapsing (i.e., multiple sclerosis and neuromyelitis optica) versus monophasic demyelinating diseases (i.e., acute disseminated encephalomyelitis, optic neuritis, transverse myelitis, clinically isolated syndrome) and (2) examine the extent to which disability, relapsing disease, and fatigue predict HRQOL. Methods: Child and/or parent-proxy reports of generic and fatigue-related HRQOL were collected for 64 pediatric patients with demyelinating diseases. HRQOL of the sample was compared with published healthy child norms. Independent samples t-tests compared HRQOL and fatigue for children with monophasic versus relapsing diseases. Regression analyses examined disability, disease presentation, and fatigue as potential predictors of HRQOL. Results: Compared with healthy child norms, generic HRQOL was significantly lower for the demyelinating disorder group, for both child and parent reports across multiple domains. As hypothesized, the relapsing disease group reported lower overall HRQOL and more fatigue than the monophasic group. Disability and relapsing disease predicted lower HRQOL for both parents and children, whereas fatigue was only predictive per the child perspective. Conclusions: Children with demyelinating diseases evidence significantly lower HRQOL than healthy peers, supporting need for intervention. Those with relapsing disease appear particularly at risk; targeting disability and fatigue may be fruitful areas for intervention.

Shocktivity: ability and avoidance of daily activity behaviors in ICD patients.

BACKGROUND: Implantable cardioverter defibrillator (ICD) shocks terminate potentially life-threatening arrhythmias and may alter patient behavior. Patients are aware of which activities they have the ability to perform, but they may choose to avoid these behaviors after receiving a shock. This study examined ICD patient ability and avoidance of progressively exertive behaviors. METHODS: ICD patients (N = 443) across the United States were surveyed using an online measure including the 12-item Duke Activity Status Index. RESULTS: As expected, many patients reported being unable to participate in more physically exertive activities such as strenuous athletic exertion (68.8%), sex (35.4%), and running a short distance (49.0%). Avoidance rates were also relatively high, as patients who reported being able to participate in these activities also reported avoiding them (ie, strenuous athletics, 76.1%). Similarly, the majority of patients reported ability to engage in sexual activity (64.6%) but many chose to avoid sexual activity (51.0%). Multiple reasons were reported for avoidance, including fear of shock, fear of heart rate increase, doctor instruction, no desire, and an "other" option. CONCLUSION: Many ICD patients experience behavioral limitations because of both a perceived inability and preference to avoid exertive activities, and possibly a prescription to do so, particularly strenuous athletic exertion. Clinical and research attention to ICD patient activity levels and reasons for avoidance may improve daily functioning and help patients return to preimplant levels of activity.

The Florida Shock Anxiety Scale (FSAS) for patients with implantable cardioverter defibrillators: testing factor structure, reliability, and validity of a previously established measure.

BACKGROUND: The implantable cardioverter defibrillator (ICD) reduces mortality in patients at risk for life-threatening arrhythmias via high energy shock. The Florida Shock Anxiety Scale (FSAS) was developed to measure ICD patient shock-related anxiety. Initial psychometric evaluation revealed good reliability and validity. The purpose of this study was to examine the psychometrics of the FSAS in a large US sample of ICD patients. METHODS: Participants were recruited via e-mail and the survey was completed online. Ultimately, 443 ICD patients (359 male and 421 White) completed the 10-item FSAS. RESULTS: Means for FSAS were comparable to previously published data (M = 15.18, SD = 6.5). Interitem reliability was good (Cronbach's α= 0.89). The FSAS was negatively correlated with single-item measures of emotional well-being (r =-0.378, P < 0.01), sense of security (r =-0.365, P < 0.01), perceived general health (r =-0.185, P < 0.01), and quality of life (r =-0.216, P < .01), demonstrating discriminant validity. Convergent validity was supported through significant correlations with number of shocks (r = 0.464, P < 0.01) and reported disruptiveness of shock (r = 0.484, P < 0.01). Confirmatory factor analysis revealed that a single (second-order) factor model (χ(2) [34] = 75.34, P < 0.05, comparative fit index = 0.98, root mean-square error of approximation = 0.05) had the best fit. CONCLUSIONS: Shock anxiety as a construct can be measured in a reliable and valid method by the FSAS. These nationally representative data suggest that a single score for shock anxiety is an easy to use and appropriate method of assessment.

A pilot study of delivering peer health messages in an HIV clinic via mobile media.

OBJECTIVE: This pilot study tested the feasibility and impact of using mobile media devices to present peer health messages to human immunodeficiency virus (HIV)-positive patients. SUBJECTS AND METHODS: A convenience sample of 30 adult patients from an outpatient HIV clinic serving a mostly rural catchment area in central Virginia volunteered for the study. Participants viewed short videos of people discussing HIV health topics on an Apple (Cupertino, CA) iPod® touch® mobile device. Pre- and post-intervention surveys assessed attitudes related to engagement in care and disease disclosure. RESULTS: Participants found delivery of health information by the mobile device acceptable in a clinic setting. They used the technology without difficulty. Participants reported satisfaction with and future interest in viewing such videos after using the mobile devices. The majority of participants used the device to access more videos than requested, and many reported the videos "hit home." There were no significant changes in participant perceptions about engagement in care or HIV disclosure after the intervention. CONCLUSIONS: This pilot study demonstrates the feasibility and acceptability of using mobile media technology to deliver peer health messages. Future research should explore how to best use mobile media to improve engagement in care and reduce perceptions of stigma.