Impact of Cardiac Neurodevelopmental Evaluation for Children with Congenital Heart Disease

Alam, Sabikha; Ilardi, Dawn; Cadiz, Emilia Maria; Kelleman, Michael; Oster, Matthew E.

doi:10.1080/87565641.2021.2009482

Cited by 10 publications

(23 citation statements)

References 28 publications

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“…An additional three publications were identified for full‐text review by subject matter experts and one from forward citation searching of conference abstracts. Full‐text screening of these 193 publications resulted in 35 publications being included in this review 9,13–16,27–56 . The stages of the search and screening process and reasons for exclusion are presented in the PRISMA‐ScR flow diagram (Figure S1).…”

Section: Resultsmentioning

confidence: 99%

“…Most care pathways (14 out of 22) were established between 2010 and 2015 and located in the USA (14 out of 22). They were most frequently found in children's hospitals (15 out of 22), with four provided across multiple health‐care settings 35,47,50,53 . Almost three‐quarters (16 out of 22) had a centralized service structure, with families required to travel to a specific tertiary‐level clinic to receive care.…”

Section: Resultsmentioning

confidence: 99%

“…Only four care pathways explicitly reported assessing children's health‐related quality of life, 32,36,50,53 and only three explicitly reported performing psychological assessment or consultation 32,33,56 . Five care pathways reported providing families with feedback, education, and resources about the importance of neurodevelopmental follow‐up 33,34,48,53,54,56 and two reported offering psychological support for parents such as counselling 35,51 . Only one care pathway reported assessment of parental quality of life or mental health 53 .…”

Section: Resultsmentioning

confidence: 99%

“…Full‐text screening of these 193 publications resulted in 35 publications being included in this review. 9 , 13 , 14 , 15 , 16 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 The stages of the search and screening process and reasons for exclusion are presented in the PRISMA‐ScR flow diagram (Figure S1 ).…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Implementing neurodevelopmental follow‐up care for children with congenital heart disease: A scoping review with evidence mapping

Abell

Eagleson

Auld

et al. 2023

Develop Med Child Neuro

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AimTo identify and map evidence describing components of neurodevelopmental follow‐up care for children with congenital heart disease (CHD).MethodThis was a scoping review of studies reporting components of neurodevelopmental follow‐up programmes/pathways for children with CHD. Eligible publications were identified through database searches, citation tracking, and expert recommendations. Two independent reviewers screened studies and extracted data. An evidence matrix was developed to visualize common characteristics of care pathways. Qualitative content analysis identified implementation barriers and enablers.ResultsThe review included 33 studies. Twenty‐one described individual care pathways across the USA (n = 14), Canada (n = 4), Australia (n = 2), and France (n = 1). The remainder reported surveys of clinical practice across multiple geographical regions. While heterogeneity in care existed across studies, common attributes included enrolment of children at high‐risk of neurodevelopmental delay; centralized clinics in children's hospitals; referral before discharge; periodic follow‐up at fixed ages; standardized developmental assessment; and involvement of multidisciplinary teams. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness. Multi‐level stakeholder engagement and integration with other services were key drivers of success.InterpretationDefining components of effective neurodevelopmental follow‐up programmes and care pathways, along with enhancing and expanding guideline‐based care across regions and into new contexts, should continue to be priorities.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Implementing neurodevelopmental follow‐up care for children with congenital heart disease: A scoping review with evidence mapping

Abell

Eagleson

Auld

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

show abstract

“…It is important to note that developmental evaluation may help in obtaining necessary educational services for children with congenital heart disease. 172…”

Section: Management Of Developmental Delay or Disorder In Individuals...mentioning

confidence: 99%

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association

Sood,

Newburger,

Anixt

et al. 2024

Circulation

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Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.

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Effects of Implementing a Standardized Surveillance Program on Cardiac Neurodevelopmental Program Referral Completion

Hennrick,

Miller,

Lai

et al. 2024

Pediatr Cardiol

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Background:Differences in surveillance methods have resulted in signi cant variability in referral outcomes across cardiac neurodevelopmental programs, with frequent barriers to referral completion including high no-show rates, lack of education, and inaccessibility for underrepresented populations. The purpose of this study was to describe implementation of a standardized surveillance program and investigate impact on referral outcomes over a two-year period.Methods:Between scal years 2021 and 2022, a surveillance program was implemented which standardized assessment of neurodevelopmental risk via a checklist as well as family education and referral procedures. All patients referred to the cardiac neurodevelopmental program during these two scal years were included in the analysis, representing one cohort before implementation and one cohort after implementation.Results:Implementation of the formal surveillance program resulted in a 66.7% increase in referral volume. Proportions of both incomplete referrals (z = 2.00, p < 0.05) and incomplete referrals due to physician-related factors (z = 4.34, p < 0.01) were signi cantly higher after implementation. A signi cant association was found after implementation between referral completion and race/ethnicity (x2 = 14.08, p < 0.01) due to a signi cantly higher number of completed referrals compared to expected values for patients identifying as Hispanic/Latino.Conclusions:This study describes the successful implementation of a standardized surveillance program, including improvements to referral volume and outcomes, and bene ts to patients/families, clinicians, and systems. Findings also support implementation of methods that improve accessibility for historically marginalized groups at greatest risk for disparities in access and quality of care.

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Impact of Cardiac Neurodevelopmental Evaluation for Children with Congenital Heart Disease

Cited by 10 publications

References 28 publications

Implementing neurodevelopmental follow‐up care for children with congenital heart disease: A scoping review with evidence mapping

Implementing neurodevelopmental follow‐up care for children with congenital heart disease: A scoping review with evidence mapping

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association

Effects of Implementing a Standardized Surveillance Program on Cardiac Neurodevelopmental Program Referral Completion

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