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The Times They Have Changed: 30 years of Cardiac Care for Children

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1 The Times They Have Changed: 30 years of Cardiac Care for Children
Stollery Children’s Hospital, October, 2013 Patricia O’Brien, MSN, CPNP-AC Nurse Practitioner, Pediatric Cardiology

2 I have no disclosures

3 Introduction

4 Why Study History? Understand who we are and how we got to where we are now Appreciate our history and proud heritage Shared identity as community Better understand change and discovery “We study the past to understand the present, we understand the present to guide the future” William Lund

5 Why Study History? Founded in 1869 Opened 2001 New Building, 1988

6 Outline Using Tetralogy of Fallot as a theme, discuss some important advances in the care of children with cyanotic heart disease Discuss some important changes in nursing over the course of my career Appreciate the varied paths to change and discovery Brief look to the future

7 Tetralogy of Fallot Most common cyanotic heart defect
Described in 1888 1. Infundibular Pulmonic Stenosis Right ventricular hypertrophy Conoventricular VSD 4. Dextroposition of the Aorta Overrides VSD

8 Tetralogy of Fallot Several types: TOF with Pulmonic Stenosis
TOF with Pulmonary Atresia TOF with Absent Pulmonary Valve TOF with Complete AV Canal

9 Tetralogy of Fallot

10 Blalock Taussig Shunt Johns Hopkins, 1945

11 Blalock Taussig Shunt Assigned to head pediatric cardiology clinic,
Johns Hopkins, 1930 Became interested in congenital heart disease “Blue Baby syndrome” Problem was lack of blood flow to the lungs Congenital Malformations of the Heart,1960 Dr. Helen Taussig

12 Blalock Taussig Shunt Dr. Blalock: chief of surgery, Johns Hopkins
Vivien Thomas, surgical assistant who advanced to supervisor of the surgical research labs Together, they developed the techniques and instruments to perform the Blalock Taussig shunt, first performed in 1944 Dr. Alfred Blalock Vivien Thomas

13 Blalock Taussig Shunt

14 Tetralogy of Fallot First complete repair, Lillehei, 1954
2 Stage repair BT shunt in infancy (not neonates) Complete repair at 3 years or older Primary repair in infancy 1970’s Barratt Boyes, Castaneda Modified BT shunt: using tube graft Described in 1962, not in wide use until 1980’s

15 Prostaglandins Early 1970’s State of Cardiac Care
Diagnostic tools: CXR, EKG, catheterization Cyanotic infants identified by appearance and blood gases (as PDA closing) Emergent catheterization: Balloon atrial septostomy (1966) for TGA Shunt for obstructed PBF in hyperbaric chamber Some survivors

16 Prostaglandins Lipid compound derived from fatty acids
Found in most tissues and organs Regulate contraction and relaxation of smooth muscle Many uses: induce childbirth Prevent and treat peptic ulcers Pulmonary hypertension Glaucoma Promotion and resolution of inflammation

17 Prostaglandin E2 1973: Coceani and Olley (Hosp. for Sick Kids, Toronto) : PGE2 relaxed the PDA in fetal lambs : Published results in 4 neonates used in the cath lab, all successful (Circulation, 53, 1976) England : Elliot (Lancet, 2, 1975) : Rapid adoption for sick neonates before publications

18 Prostaglandin E1 Lifesaving for many infants
Increase pulmonary blood flow Improve tissue oxygenation Correct metabolic acidosis Improve chance of successful surgery Best response in younger infants, lower PaO2 Quickly tested in infants with IAA, CoA and d-TGA

19 Prostaglandin E1 Rapid clinical use: Alternative had high mortality
Dramatic clinical improvement Easy to use No barriers to obtaining drug Clinical trial published after it was used nationwide in 492 infants (Freed et al, Circulation 64, 1981)

20 Close Ductus Arteriosus
If you could open a PDA, you could also close it! Indomethacin: Prostaglandin inhibitor Effects of indomethacin in premature infants with PDA Studied in one of the first multicenter trials in cardiology (Gersony et al, J Pediatr 102, 1983)

21 My Career in Pediatric Cardiology
Graduated university, BSN, 1977 CNS in pediatric cardiac surgery, UCLA, 1982 Nurse practitioner, Boston Children’s Hospital, 1987

22 Pediatric Cardiology, 1980 Echocardiography in it’s infancy, 1980
No Arterial Switch procedure, 1982 No Stage 1 Norwood for HLHS, 1981 No interventional catheterizations First balloon dilation of PS, 1983 No MRI, late 1990’s No ECMO, 1984 No pediatric heart transplants, 1984

23 Hospitals, 1980 Large rooms, open wards Much less technology
Paper based charts IV pumps being developed Limited parent visiting Nurses did not round with doctors

24 Technology in 1980 Still an analog world Paper records No cell phones
Computer technology Microsoft, 1975 Apple, 1976 Personal computers coming on the market

25 Pulse Oximetry What is your O2 Saturation??

26 Pulse Oximetry Measurement of transmitted light through a translucent measuring site to determine oxygen saturation Oxygen rich hemoglobin absorbs more infrared light

27 Pulse Oximetry 1930’s Germany ear oxygen meter
1940’s “oximeter”: light through a red filter was oxygen sensitive Used in aviation and research 1970’s Aoyage, Japan First patent on pulse oximeter 1980’s Biox and Nellcor developed first commercial machines in clinical use

28 Pulse Oximetry 1983: Evaluation of Pulse Oximetry. 1988:
(Yelderman and New, Anesthesia 59, 1983) 1988: Accuracy of Pulse Oximetry in Neonates Reliability in Hypoxic Infants By 1997: Pulse Oximetry recommended as a 5th pediatric vital sign (Mower et al, Pediatrics 99, 1997)

29 Pulse Oximetry Increased safety of anesthesia
WHO now trying to have pulse oximeters in every OR in the world Screening newborns for congenital heart disease Now recommended in the US (Kemper, 2011) Measure right hand and one foot on DOL #2 Home monitoring programs (Ghanayem, 2003) Decrease interstage mortality for single ventricle infants

30 JET Junctional Ectopic Tachycardia
1980 Electrophysiology had few tools: EKG’s Pacemakers Medications: Digoxin Beta blockers Quinidine

31 JET Junctional Ectopic Tachycardia
Uncommon form of SVT Low cardiac output and death in 20-50% of pts. Described in 1980’s Transient postop issue in infants with surgeries near the AV junction Ex: TOF, VSD Difficult to manage, no medications

32 JET Junctional Ectopic Tachycardia
Multifaceted Treatment Strategy ( ) Fever control Cooling Procainamide Later, use of Amiodarone, 1993 Deaths now uncommon

33 What was Happening in Nursing?
Importance of Patient Safety Advanced Nursing Practice Nursing Research

34 Patient Safety Creating Safe Passage

35 as the very first requirement in a hospital
“It might seem a strange principle to enunciate as the very first requirement in a hospital that it should do the sick no harm. It is quite necessary nevertheless to lay down such a principle.” Florence Nightingale

36 Patient Safety 1980’s: focus on mortality, less on morbidity
Reluctant to admit errors Errors thought to be individual mistake, not a system problem Quality Assurance, not Improvement Concern about “cookbook” medicine Too many protocols, not enough thought, not individualized to the patient

37 Patient Safety Institute for HealthCare Improvement, 1980’s “To Err is Human” Institute of Medicine, 1999 Leapfrog Group, business group, 2000 Changed focus to prevention: Systems issues, not individual errors Assumed people would make mistakes Make it harder to make an error Best practices, evidenced based medicine

38 Patient Safety Hospital System changes: Timeouts for procedures
Surgical checklists Computerized medication order entry Infection Control strategies: Hand washing, line placement, pneumonia prevention Improve communication Handoffs, shift report, teamwork Involve patients and parents

39 Patient Safety Infections were the cost of doing business



42 Patient Safety

43 Advanced Nursing Practice
Master’s Prepared Nurses in US 4 groups Nurse practitioners Clinical nurse specialists Nurse Midwives Nurse Anesthetists

44 Clinical Nurse Specialists
Prominent in the 1980’s, now returning Hospital based Focus on improving nursing care of specific patient population Clinical practice, education, consultant, research

45 Nurse Practitioners Clinical management of acute and chronic illnesses
Initially in primary care in pediatrics, 1965 Neonatal NP’s, 1970’s Prescriptive authority since 1990’s Expansion into hospital settings, late 1980’s ACC Task Force on Workforce, 1994 NAPNAP recognized acute care PNP’s, 2004

46 Nurse Practitioners Boston Children’s Hospital
First nurse practitioners, ambulatory, 1980’s First inpatient NP, cardiac surgery, 1987 Boston Children’s Hospital, 2013 NP’s in Cardiology: 40 Total number of NP’s: 250 PNP’s practicing in the US: 13, 384 Based on national certification data

47 Growth of NP Practice Safe effective clinicians within their scope of practice Collaborative model: MD/NP teams Different skill sets: MD- Diagnosis, procedures NP-Clinical management, patient counseling, care coordination Fewer legal and administrative barriers to practice

48 Growth of NP Practice Changing Workforce needs Lower cost of NP’s
Decreasing resident and fellow hours Decreasing number of fellows Increased clinical demand Increased specialization Lower cost of NP’s Less costly education Lower pay

49 Nursing Research Florence Nightingale active practice 1853-1875
Infection Control Asepsis Cohorting sickest patients together near the nurses station Use of data, statistics, outcome data

50 Nursing Research 1952 Nursing Research Journal established
1960’s only 14 graduate programs in nursing in the US 1964 Nurse Training Act spurred development of graduate nursing programs

51 Nursing Research Growth in nursing research:
Increased numbers of PhD prepared nurses Master’s prepared clinicians at the bedside Nurse Scientists on hospital staff Increase in funding US: National Center for Nursing Research, NIH, 1986 Computer technology

52 Nursing Research Pediatric Nursing Research
Martha Curley, PhD Pediatric CV Nursing Research Survey Researchers: Karen Uzark, PhD: QOL Kathy Mussatto, PhD: Family adaptation Gwen Rempel, PhD: Parental decision making

53 Pediatric Clinical Research
Pediatric Critical Care research RESTORE multicenter trial Development of the Braden Q scale for skin assessment Development of the Withdrawal Assessment Tool Dr. Martha Curley Professor University of Pennsylvania SON

54 Pediatric Pressure Ulcer Scale Braden Q
It began with a bed It began with a bed

55 Pressure Ulcer Assessment Scale
Bergstrom, Braden, Laguzza, Holman, Nursing Research, 1987

56 Pediatric Pressure Ulcer Scale: Braden Q
Braden Scale has 6 subscales, scored from 1 (high risk) to 3 or 4 (low risk), Less than 16: risk for pressure ulcers Quigley and Curley (1996) adapted the scale for pediatric use Accounted for developmental differences Prevalence of tube feedings Availability of lab values and O2 saturations Added 7th Subscale: Tissue Perfusion and Oxygenation Excluded unrepaired CHD, intracardiac shunting

57 Pediatric Pressure Ulcer Scale Braden Q
Curley and others established predictive values (Nursing Research, 52, 2003) Adopted in many pediatric settings The work goes on: Predicting Immobility-related and Medical device-related Pressure Ulcer Risk in Pediatric Patients (Curley, Quigley, Noonan, McCabe, Wypij) Funded study in 6 U.S. children’s hospitals Includes the cardiac population and extends assessment to injury related to medical devices

58 Withdrawal Assessment Tool: WAT -1
Accurate assessment of withdrawal is necessary for prevention and treatment Lack of adequate measures for pediatrics Most used was neonatal abstinence score Franck studying opioid withdrawal ( ) 11 item (12 point) scale Objective items, easily integrated into practice Fewer items than previous scales, twice daily

59 Withdrawal Assessment Tool: WAT-1
Instrument: Record review (temp, vomiting, loose stools) 2 minute pre-stimulation observation 1 minute stimulus observation, Recovery Score 0-12 Score > 3 correlated with clinical evidence for opioid withdrawal High sensitivity (0.87) and specificity (0.88) ( Franck, et al, Peds Crit Care Med, 2008) (Franck, et al, Pain, 2012) Widely adopted

60 Pediatric CV Nursing Research
Pediatric Nursing Research, AHA, 2008 Literature Review, English, CINHAL and MEDLINE databases Search Terms: heart disease, congenital, heart, cardiac, cardiovascular Qualifiers: Children, nursing, research 156 studies identified Limiting factors: only nurse as primary author, may include reviews, miss research on narrow topics

61 Pediatric CV Nursing Research

62 Pediatric CV Nursing Research

63 Pediatric CV Nurse Researchers
Karen Uzark, PhD One of first PhD’s Co-Director, Heart Center Research, U. Michigan Research: Quality of Life Heart Transplantation Psychosocial responses Kathleen A.Mussatto, PhD Research coordinator Recent PhD Now Nurse Scientist, Children’s Hospital of Wisconsin Research: Quality of Life Developmental Outcomes

64 Pediatric CV Nurse Researchers
First study on parent decision making after antenatal diagnosis of CHD (JOGNN, 2004) Multiple studies on parenting children with complex CHD Current studies: School age children with complex CHD: stories of everyday life Strengthening family resilience Collaborative studies: Alton, G: Functional Outcomes after neonatal surgery Ellinger, MK: Parental Decision Making about HLHS Shearer, K: Adolescents with CHD Dr. Gwen Rempel

65 What Hasn’t Changed It is still about the children and families


67 Lessons from the Past We can always do better
Some advances take years of persistent work Braden Q, Treatment of JET New discoveries and technologies can create rapid change Prostaglandins, pulse oximetry Collaboration and teamwork All examples

68 Future Challenges Our patients will live longer
Currently more adults with CHD than children Have to think really long term Other co-morbidities: HTN, coronary disease, obesity Other organ system disease

69 Future Challenges New Technologies, New Treatments
Genetics and genomics Tissue engineering Stem cell research Catheter interventions replacing surgery Increased emphasis on prevention Continued efforts to reduce morbidity and improve quality of life ???????????????

70 “When I want to understand what is happening today
Or try to decide what will happen tomorrow, I look back” Omar Khayyem

71 Thank You Dr. Michael Freed Dr. Barry Keane Dr. Martha Curley
Sandy Quigley, CPNP Debra Morrow, RN Elizabeth Tong, MSN, CPNP Julie Rehman, RN Dr. Gwen Rempel Google

72 Thank you!


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