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Cardiomyopathy V: Interprofessional Care01:29

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Managing cardiomyopathy involves addressing underlying or precipitating causes, treating heart failure with medications, and implementing dietary changes and a balanced exercise and rest regimen.Lifestyle ModificationsCardiomyopathy patients should adopt a low-sodium diet to reduce fluid retention and manage heart failure. A personalized exercise and rest plan helps maintain physical fitness without overstraining the heart. Avoiding alcohol and tobacco is essential to prevent further damage to...
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Variations in practice in cardiac neurodevelopmental follow-up programs.

Thomas A Miller1, Anjali Sadhwani2, Jacqueline Sanz3

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Pediatric cardiac neurodevelopment programs vary significantly in structure and services. Many centers focus on early childhood evaluations, with less standardization for older children with congenital heart disease.

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Area of Science:

  • Pediatric Cardiology
  • Neurodevelopmental Pediatrics
  • Healthcare Management

Background:

  • Congenital heart disease (CHD) impacts neurodevelopmental outcomes in children.
  • Guidelines published in 2012 spurred the development of cardiac neurodevelopmental follow-up programs.
  • Existing programs have developed independently, leading to potential variations in care.

Purpose of the Study:

  • To characterize the structural and personnel variations in cardiac neurodevelopmental programs.
  • To understand the current landscape of follow-up care for children with CHD.

Main Methods:

  • A 31-item survey was distributed to member institutions of the Cardiac Neurodevelopmental Outcome Collaborative.
  • Multidisciplinary teams at responding centers completed the survey.
  • Responses from 23 of 29 invited centers (79% response rate) were compiled descriptively.

Main Results:

  • Centers reported a median of 5 neurodevelopment visits from birth to 5 years, compared to 2 visits from 5 to 18 years.
  • 53% of centers lacked standards for routine neurodevelopmental evaluations after age 5.
  • Bayley Scales and Wechsler Scales were commonly used; neonatal clinical assessment was more frequent than brain imaging.

Conclusions:

  • Formal cardiac neurodevelopment follow-up programs are established in response to clinical needs and guidelines.
  • Significant variability exists in screening and testing approaches.
  • Resources are often concentrated on younger pediatric patients, highlighting a need for improved care standardization for older children.