Complete PHOM Indicator Profile Report of Critical congenital heart disease (CCHD) screening
Definition
Percentage of Utah newborns screened for state mandated CCHD screening (by pulse oximetry) and the results.Numerator
Percentage Utah of newborns who either passed, failed, or were not screened for CCHD (by pulse oximetry).Denominator
The number of live born infants born in Utah during the year.Why Is This Important?
Critical congenital heart disease (CCHD) represents a group of heart defects that cause serious, life-threatening symptoms and require intervention within the first days or first year of life. CCHD is often treatable if detected early. Some babies affected with CCHD can look and act healthy at first, but within hours or days after birth, they can have serious complications. Pulse oximetry newborn screening is a non-invasive test measuring how much oxygen is in the blood and can help to identify babies that may be affected with CCHD. Early identification allows for earlier contact with specialists who can help manage the infant's care in a timely and appropriate way, reducing potential complications. Utah CCHD Website[[br]] [https://familyhealth.utah.gov/cshcn/cchd/] Testing of Newborn Infants Utah Health and Human Services Code 26B-4-319(1)(d)[[br]] [https://le.utah.gov/xcode/Title26B/Chapter4/26B-4-S319.html] Birth Defects and Critical Congenital Heart Disease Reporting Rule R398-5[[br]] Screening for Critical Congenital Heart Disease (CCHD) by pulse oximetry (POX) became mandatory for all newborns born in Utah on October 1, 2014, and should be completed when the newborn is between 24 to 48 hours old and is reported through Rule R398-5, Birth Defects and Critical Congenital Heart Disease Reporting.[[br]] [https://adminrules.utah.gov/public/rule/R398-5/Current%20Rules?searchText=398]Other Objectives
Congenital heart disease (CHD) is one of the most common congenital abnormalities found in newborn babies. Critical congenital heart disease (CCHD) defines more severe forms of CHD that can lead to serious illness or even death soon after the baby is born. Important facts about CCHD: *CCHD occurs when the heart does not develop normally before birth *CCHD is a leading cause of newborn and infant death *Some babies with CCHD are discovered by prenatal ultrasound, but other babies with CCHD are diagnosed after they are born *CCHD affects 2-3 of every 1,000 births[[br]] [[br]] To prevent serious morbidity and mortality resulting from missed or delayed diagnosis of CCHD, in 2011 the U.S. Secretary of Health and Human Services recommended that all newborns be screened for CCHD using pulse oximetry. As of October 1, 2014, Utah law requires every newborn infant born in the state to be screened for CCHD. The screening takes just minutes and senses the oxygen saturation by placing a soft probe on the infant's right hand and either foot. Low saturation values can signal a problem. Screening with pulse oximetry can identify a number of types of critical CHDs, the most common of which are: *Coarctation of the Aorta *Double Outlet Right Ventricle *Ebstein's Anomaly *Hypoplastic Left Heart Syndrome *Interrupted Aortic Arch *Pulmonary Atresia with Intact Ventricular Septum *Single Ventricle *Tetralogy of Fallot *Total Anomalous Pulmonary Venous Return *Transposition of the Great Arteries *Tricuspid Atresia *Truncus ArteriosusHow Are We Doing?
Utah is compliant with State Statute and CCHD screening.How Do We Compare With the U.S.?
The following website has a listing of all states and current testing protocols:[[br]] [http://www.babysfirsttest.org][[br]] [https://www.newsteps.org]Available Services
[[br]]Utah Department of Health and Human Services[[br]] Children with Special Health Care Needs[[br]] [https://familyhealth.utah.gov/cshcn/cchd/] Utah Birth Defect Network[[br]] [https://familyhealth.utah.gov/cshcn/ubdn/] The Children's Heart Foundation[[br]] [http://www.childrensheartfoundation.org/] Intermountain Healing Hearts[[br]] [http://www.intermountainhealinghearts.org/] March of Dimes[[br]] [https://www.marchofdimes.org/index.aspx] Mended Little Hearts[[br]] [https://mendedhearts.org/]More Information
[[br]]Baby's First Test: Critical Congenital Heart Disease[[br]] [http://www.babysfirsttest.org/newborn-screening/conditions/critical-congenital-heart-disease-cchd][[br]]Graphical Data Views
Percentage of newborns not screened by pulse oximetry by reason, Utah, 2014-2023
Screening Results | Year | Percentage of newborns | ||||
---|---|---|---|---|---|---|
Record Count: 50 | ||||||
ECHO Performed | 2014 | 4.1% | ||||
ECHO Performed | 2015 | 7.7% | ||||
ECHO Performed | 2016 | 9.4% | ||||
ECHO Performed | 2017 | 10.6% | ||||
ECHO Performed | 2018 | 69.2% | ||||
ECHO Performed | 2019 | 74.5% | ||||
ECHO Performed | 2020 | 76.6% | ||||
ECHO Performed | 2021 | 75.8% | ||||
ECHO Performed | 2022 | 81.1% | ||||
ECHO Performed | 2023 | 84.7% | ||||
CCHD Screen Not Performed | 2014 | 95.2% | ||||
CCHD Screen Not Performed | 2015 | 90.9% | ||||
CCHD Screen Not Performed | 2016 | 88.8% | ||||
CCHD Screen Not Performed | 2017 | 88.0% | ||||
CCHD Screen Not Performed | 2018 | 18.6% | ||||
CCHD Screen Not Performed | 2019 | 13.5% | ||||
CCHD Screen Not Performed | 2020 | 11.8% | ||||
CCHD Screen Not Performed | 2021 | 14.1% | ||||
CCHD Screen Not Performed | 2022 | 8.2% | ||||
CCHD Screen Not Performed | 2023 | 6.6% | ||||
Deceased / Palliative Care | 2014 | 0.4% | ||||
Deceased / Palliative Care | 2015 | 0.6% | ||||
Deceased / Palliative Care | 2016 | 0.9% | ||||
Deceased / Palliative Care | 2017 | 0.9% | ||||
Deceased / Palliative Care | 2018 | 9.9% | ||||
Deceased / Palliative Care | 2019 | 9.5% | ||||
Deceased / Palliative Care | 2020 | 9.2% | ||||
Deceased / Palliative Care | 2021 | 7.9% | ||||
Deceased / Palliative Care | 2022 | 7.5% | ||||
Deceased / Palliative Care | 2023 | 6.3% | ||||
Refused | 2014 | 0.0% | ||||
Refused | 2015 | 0.1% | ||||
Refused | 2016 | 0.3% | ||||
Refused | 2017 | 0.4% | ||||
Refused | 2018 | 1.3% | ||||
Refused | 2019 | 1.5% | ||||
Refused | 2020 | 1.2% | ||||
Refused | 2021 | 1.9% | ||||
Refused | 2022 | 2.2% | ||||
Refused | 2023 | 1.8% | ||||
*Other | 2014 | 0.3% | ||||
*Other | 2015 | 0.7% | ||||
*Other | 2016 | 0.5% | ||||
*Other | 2017 | 0.2% | ||||
*Other | 2018 | 1.0% | ||||
*Other | 2019 | 0.9% | ||||
*Other | 2020 | 1.2% | ||||
*Other | 2021 | 0.4% | ||||
*Other | 2022 | 1.1% | ||||
*Other | 2023 | 0.6% |
Data Notes
*Other: Includes newborns who were adopted (either out of state or foreign adoptions), newborns transferred out of state prior to screening or a MD was consulted and deferred the screen. Prior to 2018, the CCHD Screening Program did not review newborns reported as Not Screened. The significant decrease in newborns Not Screened beginning in 2018 represents the effort of the CCHD Screening Program verifying the reason a newborn was Not Screened. A newborn who has a diagnostic echocardiogram performed does not require a CCHD screen.Data Sources
- Utah Birth Defect Network
- Utah Birth Certificate Database, Office of Vital Records and Statistics, Utah Department of Health and Human Services
Percentage of newborns screened for CCHD by pulse oximetry by year, Utah, 2014-2023
Screening Results | Year | Percentage of newborns | ||||
---|---|---|---|---|---|---|
Record Count: 30 | ||||||
Passed | 2014 | 44.6% | ||||
Passed | 2015 | 92.2% | ||||
Passed | 2016 | 93.5% | ||||
Passed | 2017 | 93.6% | ||||
Passed | 2018 | 96.6% | ||||
Passed | 2019 | 96.6% | ||||
Passed | 2020 | 96.7% | ||||
Passed | 2021 | 96.4% | ||||
Passed | 2022 | 96.2% | ||||
Passed | 2023 | 95.4% | ||||
Failed | 2014 | 0.1% | ||||
Failed | 2015 | 0.2% | ||||
Failed | 2016 | 0.1% | ||||
Failed | 2017 | 0.2% | ||||
Failed | 2018 | 0.2% | ||||
Failed | 2019 | 0.2% | ||||
Failed | 2020 | 0.2% | ||||
Failed | 2021 | 0.3% | ||||
Failed | 2022 | 0.3% | ||||
Failed | 2023 | 0.2% | ||||
Not Screened | 2014 | 55.3% | ||||
Not Screened | 2015 | 7.7% | ||||
Not Screened | 2016 | 6.4% | ||||
Not Screened | 2017 | 6.2% | ||||
Not Screened | 2018 | 3.2% | ||||
Not Screened | 2019 | 3.2% | ||||
Not Screened | 2020 | 3.2% | ||||
Not Screened | 2021 | 3.4% | ||||
Not Screened | 2022 | 3.5% | ||||
Not Screened | 2023 | 4.4% |
Data Notes
Denominator for this graph is the number of live born infants born to Utah residents during the year.Data Sources
- Utah Birth Defect Network
- Utah Birth Certificate Database, Office of Vital Records and Statistics, Utah Department of Health and Human Services
Page Content Updated On 10/01/2024,
Published on 10/03/2024