Enhancing interprofessional interagency collaboration for minoritized and low-income children with chronic illnesses.

Children with chronic illnesses present unique health, psychosocial, and learning challenges. Due to the complexities surrounding their needs, these children and their families often encounter multilayered barriers when accessing educational services and health care management. Medical-family-school interprofessional interagency collaborations (IIC) are needed to facilitate information sharing across institutions, treatment alignment among care partners, and equitable and high-quality school-based service delivery. This article presents a novel hospital-based school consultative liaison service, the Educational Achievement Partnership Program (EAPP), which conducts IIC with the families, schools, hospitals, and community care partners of children with chronic illnesses. We explore disproportionalities in IIC services among low-income and racially/ethnically minoritized children and examine ways to increase IIC service access and utilization. Results demonstrate that systematic changes targeting in-person communication with families significantly increased minoritized and low-income children's EAPP participation. Despite this increase, differences occurred between minoritized and White children's utilization through all stages of EAPP service delivery. These results underscore the importance of ongoing IIC service evaluation to examine the effectiveness of implementation components. We discuss implications and highlight opportunities for similar medical-family-school IIC under a school psychologist-led medical liaison consultative approach. We conclude that IIC is best fostered through innovations in communication models, graduate training, practice, and research. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A Psychosocial Care Model for Families Affected by Congenital Heart Disease.

OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals. SETTING: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection. SUBJECTS: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents' preferences for psychosocial support changed over time with changes to their child's medical status and across care settings (e.g., hospital, outpatient clinic). CONCLUSIONS: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond.

Prevalence and associated factors of post-traumatic stress disorder in parents whose infants have single ventricle heart disease.

INTRODUCTION: Post-traumatic stress disorder occurs in parents of infants with CHD, contributing to psychological distress with detrimental effects on family functioning and well-being. We sought to determine the prevalence and factors associated with post-traumatic stress disorder symptoms in parents whose infants underwent staged palliation for single ventricle heart disease. MATERIALS AND METHODS: A large longitudinal multi-centre cohort study evaluated 215 mothers and fathers for symptoms of post-traumatic stress disorder at three timepoints, including post-Norwood, post-Stage II, and a final study timepoint when the child reached approximately 16 months of age, using the self-report questionnaire Impact of Event Scale - Revised. RESULTS: The prevalence of probable post-traumatic stress disorder post-Norwood surgery was 50% of mothers and 39% of fathers, decreasing to 27% of mothers and 24% of fathers by final follow-up. Intrusive symptoms such as flashbacks and nightmares and hyperarousal symptoms such as poor concentration, irritability, and sudden physical symptoms of racing heart and difficulty breathing were particularly elevated in parents. Higher levels of anxiety, reduced coping, and decreased satisfaction with parenting were significantly associated with symptoms of post-traumatic stress disorder in parents. Demographic and clinical variables such as parent education, pre-natal diagnosis, medical complications, and length of hospital stay(s) were not significantly associated with symptoms of post-traumatic stress disorder. DISCUSSION: Parents whose infants underwent staged palliation for single ventricle heart disease often reported symptoms of post-traumatic stress disorder. Symptoms persisted over time and routine screening might help identify parents at-risk and prompt referral to appropriate supports.

Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease.

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child's health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team's scope of practice, (2) perceived expectation to "stay strong," (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team's ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

School considerations for children with heart disease during the COVID-19 pandemic.

This article presents data on Coronavirus disease (COVID-19)-related learning, health, and mental health concerns of 134 families of children with heart disease (HD), the most common birth defect, who are followed by a unique hospital-based Educational Achievement Partnership Program (EAPP) designed to serve as a liaison across the family, the child's medical team, and school. At-school, remote, and hybrid learning alternatives prompted by the COVID-19 pandemic presented families with an especially complex decision to make for children with HD due to competing complications in this population: Increased susceptibility to illness, greater risk of neuropsychological problems, and higher level of individualized education services that are not readily transferable to a home learning platform. Parents of school-aged children with HD completed a survey about COVID-19-related school support needs as part of a quality improvement project. Survey results revealed 51% of children would learn from home during the 2020-2021 school year due to concerns about the child's underlying health condition, indicating a marked change in schooling modality compared to prior years (4% in 2019). Nearly 75% of families requested medical guidance for COVID-19-related school health and education plan addendums. Seventy-three percent of families had mental health concerns about their child; severity of HD was related to families' reports about mental health concerns. Findings suggest follow-up is needed by school psychologists and medical consultative collaborative partners to support the transition back to in-person schooling after the COVID-19 pandemic concludes and to identify long-term educational consequences of disrupted learning during this period. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Predictors of behavioural and emotional outcomes in toddlers with congenital heart disease.

OBJECTIVES: Children with congenital heart disease (CHD) are at risk for psychological challenges, including internalising (e.g., depression, anxiety) and externalising (e.g., aggression, inattention) problems. The present study aimed to investigate the development of psychological concerns in early childhood by identifying predictors of behavioural and emotional problems in toddlers with CHD. METHODS: Children with CHD who were seen for neurodevelopmental (ND) evaluation at 12 ± 3 months of age, who completed the Bayley Scales of Infant Development-III (BSID-III) and whose parents completed the Child Behavior Checklist (CBCL), a standardised measure of emotional/behavioural problems at age 24-36 months, were included in the study (n = 144). CBCL scores were compared to test norms and classified as normal or abnormal. A classification tree was used to assess the association between CBCL scores and demographic and clinical variables. RESULTS: Multi-variable tree analyses revealed lower BSID-III language composite scores at age 9-15 months predicted clinical CBCL internalising (p < 0.001), externalising (p = 0.004) and total scores (p < 0.001) at age 24-36 months. Lower maternal education levels also predicted clinical CBCL internalising (p < 0.0001), externalising (p < 0.001) and total scores (p < 0.0001). CONCLUSIONS: Lower language abilities and lower maternal education predict increased behavioural and emotional problems in toddlers with CHD. These risk factors should be considered during routine ND evaluations to allow for earlier identification of children with CHD and their families who may benefit from psychological support.

Evaluation of a Systems-Wide Telebehavioral Health Training Implementation in Response to COVID-19.

In response to the Coronavirus disease 2019 pandemic, it became important to rapidly train mental health providers to provide telebehavioral health services (TBH) within a pediatric care setting. This study examined the perceived usefulness of various TBH training materials; provider motivation, comfort, and confidence in implementation of TBH services; and perceived benefits and barriers of TBH. After completing various training options and implementing TBH services for 1 month, providers indicated all training materials were helpful, with the recorded webinar being identified as the most helpful resource. This study describes the rapid training of mental health providers in preparation of system-wide TBH services.

Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative.

Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.

Impact of Valve Type (Ross vs. Mechanical) on Health-Related Quality of Life in Children and Young Adults with Surgical Aortic Valve Replacement.

BACKGROUND: The impact of aortic valve replacement (AVR) type on health-related quality of life (HRQOL) in adolescents and young adults is unclear, but may vary depending on need for anticoagulation or re-intervention. We sought to determine the differences in HRQOL following AVR with either the Ross procedure or mechanical AVR in this young population. METHODS: Patients 14-35 years old and at least 1 year post-AVR were included. HRQOL was assessed using the Short Form-36 (SF-36). Valve-specific concerns regarding anticoagulation and reoperation were also assessed. Clinical outcome data were obtained by chart review. RESULTS: A total of 51 patients were enrolled: 24 (47%) Ross and 27 (53%) mechanical AVR. Ross patients were younger at time of AVR (16 vs. 22 years, p < 0.01) and study enrollment (23.7 vs 29.5 years, p < 0.01). Median follow-up from AVR to study enrollment was similar (5.4 years for Ross vs. 5.6 years for mechanical, p = 0.62). At last follow-up, clinical outcomes including cardiac function, functional class, and aortic valve re-intervention rates were similar between groups, although mechanical valve patients had more bleeding events (p = 0.012). SF-36 scores were generally high for the entire cohort, with no significant difference between groups in any domain. Mechanical AVR patients reported more concern about frequency of blood draws (p < 0.01). Concern for reoperation was similar between both groups. CONCLUSION: Despite more bleeding events and concern about the frequency of blood draws, adolescents and young adults with mechanical AVR reported similarly high levels of HRQOL compared to those following Ross AVR.

Six-Year Neurodevelopmental Outcomes for Children With Single-Ventricle Physiology.

OBJECTIVES: To determine if neurodevelopmental deficits in children with single-ventricle physiology change with age and early developmental scores predict 6-year outcomes. METHODS: In the Single Ventricle Reconstruction Trial, Bayley Scales of Infant Development, Second Edition, were administered at 14 months of age, and parents completed the Behavior Assessment System for Children, Second Edition (BASC-2) annually from the ages of 2 to 6 years. Scores were classified as average, at risk, or impaired. We calculated sensitivities, specificities, and positive and negative predictive values of earlier tests on 6-year outcomes. RESULTS: Of 291 eligible participants, 244 (84%) completed the BASC-2 at 6 years; more Single Ventricle Reconstruction participants than expected on the basis of normative data scored at risk or impaired on the BASC-2 Adaptive Skills Index at that evaluation (28.7% vs 15.9%; P < .001). Children with Adaptive Skills Composite scores <2 SD below the mean at the age of 6 were more likely to have had delayed development at 14 months, particularly on the Psychomotor Development Index (sensitivity of 79%). However, the positive predictive value of the 14-month Mental Development Index and Psychomotor Development Index for 6-year BASC-2 Adaptive Scores was low (44% and 36%, respectively). Adaptive Skills Composite score impairments at the age of 6 were poorly predicted by using earlier BASC-2 assessments, with low sensitivities at the ages of 3 (37%), 4 (48%), and 5 years (55%). CONCLUSIONS: Many children with hypoplastic left heart syndrome who have low adaptive skills at the age of 6 years will not be identified by screening at earlier ages. With our findings, we highlight the importance of serial evaluations for children with critical congenital heart disease throughout development.

Impact of a paediatric cardiac rehabilitation programme upon patient quality of life.

INTRODUCTION: Cardiac rehabilitation programmes for paediatric patients with congenital heart disease (CHD) have been shown to promote emotional and physical health without any associated adverse events. While prior studies have demonstrated the effectiveness of these types of interventions, there has been limited research into how the inclusion of psychological interventions as part of the programme impacts parent-reported and patient-reported quality of life. MATERIALS AND METHODS: Patients between the ages of 7 and 24 years with CHD completed a cardiac rehabilitation programme that followed a flexible structure of four in person-visits with various multidisciplinary team members, including paediatric psychologists. Changes in scores from the earliest to the latest session were assessed regarding exercise capacity, patient functioning (social, emotional, school, psychosocial), patient general and cardiac-related quality of life, patient self-concept, and patient behavioural/emotional problems. RESULTS: From their baseline to final session, patients exhibited significant improvement in exercise capacity (p = 0.00009). Parents reported improvement in the patient's emotional functioning, social functioning, school functioning, psychosocial functioning, cognitive functioning, communication, and overall quality of life. While patients did not report improvement in these above areas, they did report perceived improvement in certain aspects of cardiac-related quality of life and self-concept. DISCUSSION: This paediatric cardiac rehabilitation programme, which included regular consultations with paediatric psychologists, was associated with divergent perceptions by parents and patients on improvement related to quality of life and other aspects of functioning despite improvement in exercise capacity. Further investigation is recommended to identify underlying factors associated with the differing perceptions of parents and patients.

Trajectories in Neurodevelopmental, Health-Related Quality of Life, and Functional Status Outcomes by Socioeconomic Status and Maternal Education in Children with Single Ventricle Heart Disease.

Trajectories of neurodevelopment and quality of life were analyzed in children with hypoplastic left heart syndrome according to socioeconomic status (SES) and maternal education. Lower SES and less maternal education were associated with greater early delays in communication and problem-solving and progressive delays in problem-solving and fine motor skills over time.

Society of Pediatric Psychology Workforce Survey: Updated Factors Related to Compensation.

OBJECTIVE: The 2017 Society of Pediatric Psychology (SPP) Workforce Survey provides self-reported compensation by pediatric psychologists, identifies predictors of compensation, and establishes a better understanding of compensation within the context of gender and race/ethnicity minority status. METHODS: SPP members who attended the SPP Annual Conference (SPPAC; April 2017) were invited to complete the survey at the conference through electronic tablets provided on-site by the Workforce Survey Committee. The survey was subsequently distributed online to SPP members who did not complete the survey at SPPAC. The statistical analyses used for this salary data employed flexible semi-parametric models, cross-validation, and prediction models for both the overall sample and academic rank subgroups. RESULTS: Of 27 potential demographic and employment-related predictors from the 2017 SPP Workforce Survey, significant predictors of salary emerged within this sample: academic rank, time since obtaining doctoral degree, managing internal and external funds (of at least $50,000), years in primary employment position, obtaining Fellowship status in the American Psychological Association (APA), and managing other employees (at least 10 people). Given low response rates for males and individuals who identify as belonging to racial and ethnic minority subgroups, only limited, exploratory results are reported for these subgroups. CONCLUSIONS: These findings suggest that not only is longevity in one's career important but managing funds/personnel and obtaining professional designations are also predictors of higher salaries for pediatric psychologists, in general. Specific implications of salary according to the psychologist's academic rank, gender, and racial/ethnicity group status are also explored.

Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome.

OBJECTIVES: We measured behavioral, quality of life (QoL), and functional status outcomes for 6-year-old children with hypoplastic left heart syndrome enrolled in the Single Ventricle Reconstruction Trial. We sought to compare these outcomes with those in the normative population and to analyze risk factors for worse outcomes within the single-ventricle group. METHODS: Parent-response instruments included the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) (primary outcome), Behavior Assessment System for Children 2, Pediatric Quality of Life Inventory 4.0, and other measures of QoL and functional status. We compared subjects with those in the normative sample using 1-sample Wilcoxon rank tests and assessed outcome predictors using multivariable regression. RESULTS: Of 325 eligible patients, 250 (77%) participated. Compared with population norms, participants had lower scores on the Vineland-II motor skills domain (90 ± 17 vs 100 ± 15; P < .001), with 11% scoring >2 SDs below the normative mean. On nearly all major domains, more study subjects (3.3%-19.7%) scored outside the normal range than anticipated for the general population. Independent risk factors for lower Vineland-II scores included perioperative extracorporeal membrane oxygenation, male sex, use of regional cerebral perfusion, catheterization after stage 2 operation, visual problems, seizure history, and more complications after 2 years (R 2 = 0.32). Independent predictors of worse Behavior Assessment System for Children 2 (R 2 = 0.07-0.20) and Pediatric Quality of Life Inventory 4.0 (R 2 = 0.17-0.25) domain scores also included sociodemographic factors and measures of morbidity and/or greater course complexity. CONCLUSIONS: At 6 years, children with hypoplastic left heart syndrome had difficulty in areas of adaptive behavior, behavioral symptoms, QoL, and functional status. Principal risks for adverse outcomes include sociodemographic factors and measures of greater course complexity. However, models reveal less than one-third of outcome variance.

Assessment of quality of life in pediatric patients with pulmonary hypertension.

The aim of this study is to evaluate quality of life in four domains (physical, emotional, social, and school) in pediatric patients with pulmonary hypertension (PH) using a validated survey (PedsQL). This is a prospective cohort study of pediatric patients aged 2-18 years with PH. Parents of all children and patients aged 8-18 years with appropriate developmental capacity completed the PedsQL survey in the clinic. Results were compared with published norms for pediatric patients, those with congenital heart disease (CHD) and cancer. Thirty-three children were enrolled yielding 32 parent and 18 patient self-reports: seven patients were aged 2-4 years; three were aged 5-7 years; 11 were aged 8-12 years, and 12 were aged 13-18 years. Twenty-one patients were classified as World Health Organization (WHO) Group I pulmonary arterial hypertension (PAH), 11 WHO Group III PH due to lung disease, and one WHO Group V with segmental PH. Thirteen patients were NYHA functional class (FC) 1, 12 were FC 2, eight were FC 3, and none were FC 4. The PH cohort had significantly lower scores than healthy children in all domains on both parent and self-report. The PH cohort also had significantly lower scores than patients with CHD (parent report: total, physical, social, school; patient self-report: total, physical, school) and cancer (parent report: school; patient self-report: physical, school). Close to 50% of participants reported at risk scores in each domain. The quality of life in pediatric PH patients assessed by PedsQL revealed functional impairment in multiple domains. Administration of the PedsQL during outpatient encounters may provide an easy, reproducible method to assess quality of life and direct referral for interventional services.

Neurodevelopmental outcomes at 2 and 4 years in children with congenital heart disease.

BACKGROUND AND OBJECTIVES: Children with congenital heart disease (CHD) are at risk for neurodevelopmental (ND) delays. The purpose of this study is to compare the ND testing results of children with CHD at 2 and 4 years of age and determine if rates of ND delays change over time. METHODS: Children with CHD completed the Bayley Scales of Infant Development-III (BSID-III) at 2 years of age, and standardized neuropsychological measures at 4 years. Scores were compared with test norms and were classified as: average (within one SD of test mean); at risk (1-2 SDs from the test mean); and delayed (>2 SD from test mean). Pearson correlations and McNemar's exact tests were performed to determine the relationship between test scores at the two times of assessment. RESULTS: Sixty-four patients completed evaluations at 24 ± 3 months of age and 4 years of age. BSID-III cognitive and fine motor scores were correlated with preschool IQ and fine motor scores, r = .75 to .87, P < .0001. Agreement in score categories was 79% for cognitive and 61% for fine motor. More patients had at risk or delayed scores at age 4 vs age 2 (P ≤ .01). CONCLUSION(S): Despite significant correlations between 2- and 4-year-old test scores, many patients who scored in the average range at age 2 showed deficits at age 4. BSID-III scores at age 2 may underestimate delays. Therefore, longitudinal ND assessment is recommended.

Stress and quality of life among parents of children with congenital heart disease referred for psychological services.

OBJECTIVE: The study examined parent stress and health-related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services. METHODS: Parents of 54 children (85% boys) aged 3 to 13 (Mage = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index - Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review. RESULTS: Half of parents of children with single ventricle anatomy had clinically significant levels of parenting stress. Parents of children with single ventricle anatomy reported more frequent illness-related stress and more difficulty dealing with illness-related stress than parents of children with two ventricle anatomy. Younger gestational age at birth and referral for attention or behavior problems were associated with greater likelihood of parent at-risk psychosocial functioning. CONCLUSIONS: Among children referred for psychological services, many parents report significant stress and significant negative impact of the child's medical condition on the family. Results underscore the need to consider assessing parent psychosocial functioning and providing additional support for parents of children with CHD.

Society of Pediatric Psychology Workforce Survey: Factors Related to Compensation of Pediatric Psychologists.

Objective: To summarize compensation results from the 2015 Society of Pediatric Psychology (SPP) Workforce Survey and identify factors related to compensation of pediatric psychologists. Methods: All full members of SPP ( n = 1,314) received the online Workforce Survey; 404 (32%) were returned with usable data. The survey assessed salary, benefits, and other income sources. The relationship between demographic and employment-related factors and overall compensation was explored. Results: Academic rank, level of administrative responsibility, and cost of living index of employment location were associated with compensation. Compensation did not vary by gender; however, women were disproportionately represented at the assistant and associate professor level. Conclusions: Compensation of pediatric psychologists is related to multiple factors. Longitudinal administration of the Workforce Survey is needed to determine changes in compensation and career advancement for this profession over time. Strategies to increase the response rate of future Workforce Surveys are discussed.

Preschool Neurodevelopmental Outcomes in Children with Congenital Heart Disease.

OBJECTIVE: To describe preschool neurodevelopmental outcomes of children with complex congenital heart disease (CHD), who were evaluated as part of a longitudinal cardiac neurodevelopmental follow-up program, as recommended by the American Heart Association and the American Academy of Pediatrics, and identify predictors of neurodevelopmental outcomes in these children. STUDY DESIGN: Children with CHD meeting the American Heart Association/American Academy of Pediatrics high-risk criteria for neurodevelopmental delay were evaluated at 4-5 years of age. Testing included standardized neuropsychological measures. Parents completed measures of child functioning. Scores were compared by group (single ventricle [1V]; 2 ventricles [2V]; CHD plus known genetic condition) to test norms and classified as: normal (within 1 SD of mean); at risk (1-2 SD from mean); and impaired (>2 SD from mean). RESULTS: Data on 102 patients were analyzed. Neurodevelopmental scores did not differ based on cardiac anatomy (1V vs 2V); both groups scored lower than norms on fine motor and adaptive behavior skills, but were within 1 SD of norms. Patients with genetic conditions scored significantly worse than 1V and 2V groups and test norms on most measures. CONCLUSIONS: Children with CHD and genetic conditions are at greatest neurodevelopmental risk. Deficits in children with CHD without genetic conditions were mild and may not be detected without formal longitudinal testing. Parents and providers need additional education regarding the importance of developmental follow-up for children with CHD.