Susan May

 CHD Expert Meeting Towards a Public Health

Science Agenda for Congenital Heart Defects

Background

Congenital heart defects (CHDs) are the most common birth defect, are the leading cause of birth defect-associated infant death, and account for over $1.4 billion in hospitalization costs each year.

1. Recognizing that there was “a lack of rigorous epidemiological and longitudinal data on individuals of all ages with congenital heart disease,” the U.S. Congress provided funding through the Appropriations Act of 2012 to the U.S. Centers for Disease Control and Prevention (CDC) to investigate these gaps.

Objective

CDC invited 50 experts to a meeting on September 10-11, 2012 to:

1. Identify the most critical gaps in knowledge about CHDs across the lifespan
2. Develop a public health science agenda for CHDs to help prioritize future activities for CDC and other public health groups and federal agencies

Participants

Invited representatives included expertise in pediatric cardiology and surgery, adult congenital heart specialists, epidemiologists, health services researchers, patients, and parents. Participants represented a range of federal agencies, state health departments, academic institutions, and professional and patient organizations.

Identified Gaps

Meeting participants highlighted significant gaps in current knowledge related to:

1. Accurate prevalence across the lifespan and the demographics of those affected
2. Causes of most CHDs
3. Longer term health outcomes across the lifespan
4. Optimal health services delivery across the lifespan

Public Health Priorities

Prioritized strategies to address gaps included:

1. Expand and modernize surveillance practices to provide prevalence estimates across the life span and to collect longitudinal data on health outcomes and services use
2. Expand current research efforts to identify modifiable causes of CHDs conducive to prevention
3. Identify current barriers impacting access to care
4. Conduct comparative effectiveness research on CHD treatments
5. Support demonstration projects to improve transition to adult care
6. Increase public awareness of the public health significance and long term impact of CHDs

National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities

Destin and Brittney wedding.

Destin is one of Nick’s friends from the hospital. Destin was born with the same type of heart problem as Nick. He went on to do the series of surgeries instead of the transplant route.

I was so happy to see him marrying.

Destin dancing with his mother.

Nick and Lacey are about to become homeowners. A big step in their lives. Nick is about to hyperventilate over the cost of owning a home. I told him to wait until he signs the papers where it says how much he will really be paying for it.

I’ve not seen it yet but hope to soon.

French bomb shelter

Andy, mother and I made a whirlwind trip south this past week. We visited family in Florida, toured around south Alabama and ended up in New Orleans. Mother hadn’t been to the National WWII Museum. We always enjoy going.

Main Finding from Study Looking at Georgia’s Experience:

About half of Georgia’s birthing hospitals are currently screening or had plans to start screening newborn babies for critical congenital heart defects (CCHD) by the end of 2012.  Currently, Georgia does not require newborn screening for CCHD. Therefore, the choice to screen newborns for CCHD lies with each hospital. Barriers to screening included:

• No clear follow-up plan for babies who screen positive for CCHD
• Uncertainty about reporting results to the public health department
• Concern about the costs to begin and maintain screening activities

Many hospitals lacked the resources to confirm a CCHD diagnosis at their own hospital. Among hospitals that were already screening for CCHD, screening practices varied. For more information, you can read the article here or find the complete summary here: http://www.cdc.gov/ncbddd/features/cchd-keyfindings-screening-ga.html.

The Western States Genetic Services Collaborative has updated the STAR-G (Screening Technology and Research in Genetics) website to include a Parent Fact Sheet for Critical Congenital Heart Disease Newborn Screening. The fact sheet was reviewed by the STAR-G Project’s Steering and Education committees, pediatric cardiologists, and family support groups.

The STAR-G Project has developed fact sheets about disorders commonly screened for by expanded newborn screening. The fact sheets were written specifically for families that have received an initial diagnosis of one of the disorders and want to obtain additional general information. They address issues and answer questions that are of particular concern to parents.

Andy and I saying a big “War Eagle.” That’s Mt. Suribachi behind us.

My friend Carol Burnside made these booties for Anndee for Easter. Can you say “Way cute?”