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© The Children's Mercy Hospital, 2014. 03/14
Critical Congenital Heart Disease
(CCHD)
Meagan Dorton, MSN, MBA, RN-CPN
Pulse Oximetry Screening forPulse Oximetry Screening for
DetectingDetecting
© The Children's Mercy Hospital, 2014. 03/14
What is the prevalence of babies born
with a Congenital Heart Defect?
3.3%
1%
0.1%
0.03%
0% 0%0%0%Data & Statistics. (2014, October 20).
Retrieved March 18, 2015, from
http://www.cdc.gov/ncbddd/birthdefects/data.
html
A. 3.3%
B. 1%
C. 0.1%
D. 0.03%
© The Children's Mercy Hospital, 2014. 03/14
Prior to CCHD screening recommendations,
approximately how many babies per year were
discharged with an unrecognized CCHD?
A. 280
B. 170
C. 520
D. 96 280
170
520
96
0% 0%0%0%
© The Children's Mercy Hospital, 2014. 03/144
© The Children's Mercy Hospital, 2014. 03/145
Laws and RegulationsLaws and Regulations
• Missouri
– Chloe’s Law
– http://health.mo.gov/living/famili
es/genetics/birthdefects/doc/cch
dreportingform.doc
• Kansas
– Quality initiative program
• Nationwide
– 37 states have passed a law or
regulation (CDC)
– Many hospitals have chosen to
screen even if states don’t
require it
© The Children's Mercy Hospital, 2014. 03/146
StatisticsStatistics
• KDHE (information current as of
9/19/2014)
– 94.8% of babies in KS currently being screened prior to
discharge
– 84% of birthing facilities in KS currently screening for CCHD
– 47% of birthing facilities reporting CCHD screens to KDHE
– 500 screens reported since May 2014
Critical Congenital Heart Defects. (n.d.). Retrieved March 4, 2015, from http://www.kdheks.gov/newborn_screening/CCHD.htm
© The Children's Mercy Hospital, 2014. 03/14
What is the estimated cost of screening
for CCHD?
A. $14
B. $20
C. $36
D. $72
$14
$20
$36
$72
0% 0%0%0%
© The Children's Mercy Hospital, 2014. 03/148
ObstaclesObstacles
• Cost
• Time
• Education
• Resources
http://www.childrensmercy.org/library/uploadedFiles/childre
nsmercyorg/Clinics_and_Services/Clinics_and_De
partments/Neonatology/20140319_Pulse%20OX
%20toolkit.pdf
© The Children's Mercy Hospital, 2014. 03/149
ResourcesResources
• 1-877-Pulse Ox (1-877-785-7369)
– Consultation
– Remote evaluation
• Education and Training
– Onsite ECHO
– Training materials for nursing staff
• http://www.childrensmercy.org/PulseOx/
© The Children's Mercy Hospital, 2014. 03/1410
ReferencesReferences
Congenital Heart Defects: Current Research Activities. (2014, June 25). Retrieved March 4, 2015, from
http://www.cdc.gov/ncbddd/heartdefects/current-research.html
Critical Congenital Heart Defects. (n.d.). Retrieved March 4, 2015, from http://www.kdheks.gov/newborn_screening/CCHD.htm.
Critical Congenital Heart Disease. (n.d.). Retrieved March 4, 2015, from http://health.mo.gov/living/families/genetics/birthdefects/cchd.php.
Data & Statistics. (2014, October 20). Retrieved March 18, 2015, from http://www.cdc.gov/ncbddd/birthdefects/data.html
Knapp, A., Metterville, D., Kemper, A., Prosser, L., & Perrin, J. (2010, September 3). EVIDENCE REVIEW: Critical Congenital Cyanotic Heart
Disease. Retrieved March 18, 2015, from
http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/nominatecondition/reviews/cyanoticheart.pdf
Newborn Screening for Critical Congenital Heart Disease (CCHD)-2014 State Actions. (2014, October 20). Retrieved March 4, 2015, from
https://www.aap.org/en-us/advocacy-and-policy/state-advocacy/Documents/2014%20CCHD%20Newborn%20Screening%20Bills,
%20Regulations,%20and%20Executive%20Orders%20-%20AAP%20Division%20of%20State%20Govt%20Affairs.pdf.
Peterson C, Ailes E, Riehle-Colarusso T, et al. Late Detection of Critical Congenital Heart Disease Among US Infants: Estimation of the Potential
Impact of Proposed Universal Screening Using Pulse Oximetry. JAMA Pediatr. 2014;168(4):361-370.
doi:10.1001/jamapediatrics.2013.4779.
Peterson C, Gross SD, Glidewell J, Garg LF, Van Naarden Braun K, Knapp MM, Beres LM, Hinton CF, Olney RS, Cassell CH. A public health
economic assessment of hospitals’ cost to screen newborns for critical congenital heart disease. Public Health Rep. 2014;129(1):86-93.

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Pulse Oximetry Screening for Detecting Critical Congenital Heart Disease

  • 1. © The Children's Mercy Hospital, 2014. 03/14 Critical Congenital Heart Disease (CCHD) Meagan Dorton, MSN, MBA, RN-CPN Pulse Oximetry Screening forPulse Oximetry Screening for DetectingDetecting
  • 2. © The Children's Mercy Hospital, 2014. 03/14 What is the prevalence of babies born with a Congenital Heart Defect? 3.3% 1% 0.1% 0.03% 0% 0%0%0%Data & Statistics. (2014, October 20). Retrieved March 18, 2015, from http://www.cdc.gov/ncbddd/birthdefects/data. html A. 3.3% B. 1% C. 0.1% D. 0.03%
  • 3. © The Children's Mercy Hospital, 2014. 03/14 Prior to CCHD screening recommendations, approximately how many babies per year were discharged with an unrecognized CCHD? A. 280 B. 170 C. 520 D. 96 280 170 520 96 0% 0%0%0%
  • 4. © The Children's Mercy Hospital, 2014. 03/144
  • 5. © The Children's Mercy Hospital, 2014. 03/145 Laws and RegulationsLaws and Regulations • Missouri – Chloe’s Law – http://health.mo.gov/living/famili es/genetics/birthdefects/doc/cch dreportingform.doc • Kansas – Quality initiative program • Nationwide – 37 states have passed a law or regulation (CDC) – Many hospitals have chosen to screen even if states don’t require it
  • 6. © The Children's Mercy Hospital, 2014. 03/146 StatisticsStatistics • KDHE (information current as of 9/19/2014) – 94.8% of babies in KS currently being screened prior to discharge – 84% of birthing facilities in KS currently screening for CCHD – 47% of birthing facilities reporting CCHD screens to KDHE – 500 screens reported since May 2014 Critical Congenital Heart Defects. (n.d.). Retrieved March 4, 2015, from http://www.kdheks.gov/newborn_screening/CCHD.htm
  • 7. © The Children's Mercy Hospital, 2014. 03/14 What is the estimated cost of screening for CCHD? A. $14 B. $20 C. $36 D. $72 $14 $20 $36 $72 0% 0%0%0%
  • 8. © The Children's Mercy Hospital, 2014. 03/148 ObstaclesObstacles • Cost • Time • Education • Resources http://www.childrensmercy.org/library/uploadedFiles/childre nsmercyorg/Clinics_and_Services/Clinics_and_De partments/Neonatology/20140319_Pulse%20OX %20toolkit.pdf
  • 9. © The Children's Mercy Hospital, 2014. 03/149 ResourcesResources • 1-877-Pulse Ox (1-877-785-7369) – Consultation – Remote evaluation • Education and Training – Onsite ECHO – Training materials for nursing staff • http://www.childrensmercy.org/PulseOx/
  • 10. © The Children's Mercy Hospital, 2014. 03/1410 ReferencesReferences Congenital Heart Defects: Current Research Activities. (2014, June 25). Retrieved March 4, 2015, from http://www.cdc.gov/ncbddd/heartdefects/current-research.html Critical Congenital Heart Defects. (n.d.). Retrieved March 4, 2015, from http://www.kdheks.gov/newborn_screening/CCHD.htm. Critical Congenital Heart Disease. (n.d.). Retrieved March 4, 2015, from http://health.mo.gov/living/families/genetics/birthdefects/cchd.php. Data & Statistics. (2014, October 20). Retrieved March 18, 2015, from http://www.cdc.gov/ncbddd/birthdefects/data.html Knapp, A., Metterville, D., Kemper, A., Prosser, L., & Perrin, J. (2010, September 3). EVIDENCE REVIEW: Critical Congenital Cyanotic Heart Disease. Retrieved March 18, 2015, from http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/nominatecondition/reviews/cyanoticheart.pdf Newborn Screening for Critical Congenital Heart Disease (CCHD)-2014 State Actions. (2014, October 20). Retrieved March 4, 2015, from https://www.aap.org/en-us/advocacy-and-policy/state-advocacy/Documents/2014%20CCHD%20Newborn%20Screening%20Bills, %20Regulations,%20and%20Executive%20Orders%20-%20AAP%20Division%20of%20State%20Govt%20Affairs.pdf. Peterson C, Ailes E, Riehle-Colarusso T, et al. Late Detection of Critical Congenital Heart Disease Among US Infants: Estimation of the Potential Impact of Proposed Universal Screening Using Pulse Oximetry. JAMA Pediatr. 2014;168(4):361-370. doi:10.1001/jamapediatrics.2013.4779. Peterson C, Gross SD, Glidewell J, Garg LF, Van Naarden Braun K, Knapp MM, Beres LM, Hinton CF, Olney RS, Cassell CH. A public health economic assessment of hospitals’ cost to screen newborns for critical congenital heart disease. Public Health Rep. 2014;129(1):86-93.

Editor's Notes

  1. Early diagnosis increases these babies chance to receive specialized treatment and avoid morbidity and mortality/ disability and death Pulse ox screening for CCHD is a simple test that compliments newborn assessment and prenatal ultrasounds. Study focused on late detection of CCHD 1998-2007 shows out of 3746 newborns born with a CCHD 29% were detected late (>3 days after birth) (6 of those were on autopsy) Hypoplastic left heart Pulmonary atresia Tetrology of fallot Total anomolous pulm venous return Tranpostiion of the great arteries Tricuspid atresia Truncus arteriosus
  2. In 2011 screening for CCHD was added to the Recommended Uniform Screening Panel for newborns Since then: MO-Chloe’s Law Effective January 1, 2014 = every newborn in the state shall be screened for CCHD (this includes newborns born in hospital settings, birthing centers, ambulatory surgical centers, and the home) Results must be reported to parent/guardian and department of health and senior services Refusal of the test must be documented in writing Kansas Quality initiative program launched in May of 2014 to increase awareness of CCHD and ensure babies are being screened This project offered training to birthing facilities on implementation of CCHD screening, providing education, resources, and technical assistance The goal of both departments of health are to ensure 100% of babies are being screened for CCHD to help reduce infant disability and death
  3. Education: how to screen the right way When we first started going out and speaking with hospitals, we found that there was an education barrier. The importance of timing was not understood and the importance of doing the pulse ox on the right upper extremity and foot was not understood. We developed an online competency to assist with If <24 hours you could get false positives r/t transition from fetal to neonatal circulation > 48 hrs can miss opportunity for intervention (e.g. prostaglandin medication administration) Upper extremity and foot = pre and post ductal measurements Resources: what to do in the event of a failed screen A positive screen means the patient has a sign of CCHD, but further testing is needed to evaluate and treat. What if no pediatric cardiologists or pediatric echocardiography at your hospital? Know your resources so in the event you have a positive, there is no delay in treatment.
  4. What should every birthing facility ensure? Know type and frequency of data to report Develop educational materials on signs/symptoms and the screening protocol Develop educational materials for parents about CCHD screening Develop working agreements with hospitals to ensure access top ECHO and f/u for newborns with possible CCHD Onsite ECHO Can be supported by uploading ultrasound images electronically for rapid interpretations Providers can support clinical management consultation while arrangements are made for neonatal critical care transport Children's Mercy Website has training resources The CDC has listed as its future steps: Using data from screening in practice to adjust and refine the set of rules for pulse oximetry screening for critical CHDs Evaluating methods to help make a diagnosis (e.g., telemedicine) for nurseries with limited resources Linking critical CHD screening and birth defects tracking data to evaluate current screening methods Analyzing the impact of screening on long-term outcomes Researching screening among certain populations (e.g., those living at higher altitudes) Tracking screening implementation across the United States Developing a critical CHD screening procedure for Neonatal Intensive Care Units Continuing to work with states that are starting critical CHD screening, including work on establishing screening procedures, data collection, and reporting