the times they have changed: 30 years of cardiac care for children stollery children’s hospital,...
TRANSCRIPT
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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
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I have no disclosures
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Introduction
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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
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Why Study History?
Opened 2001
New Building, 1988
Founded in 1869
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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
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Tetralogy of Fallot
• Most common cyanotic heart defect
• Described in 1888 1. Infundibular Pulmonic
Stenosis
2. Right ventricular hypertrophy
3. Conoventricular VSD
4. Dextroposition of the Aorta– Overrides VSD
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Tetralogy of Fallot
• Several types:– TOF with Pulmonic Stenosis– TOF with Pulmonary Atresia– TOF with Absent Pulmonary Valve– TOF with Complete AV Canal
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Tetralogy of Fallot
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Blalock Taussig Shunt
Johns Hopkins, 1945
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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 1898-1986
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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 BlalockVivien Thomas
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Blalock Taussig Shunt
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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
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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
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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
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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
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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
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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)
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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)
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My Career in Pediatric Cardiology
Graduated university, BSN, 1977
CNS in pediatric cardiac surgery, UCLA, 1982
Nurse practitioner, Boston Children’s Hospital, 1987
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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
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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
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Technology in 1980
Still an analog world
Paper records
No cell phones
Computer technology– Microsoft, 1975– Apple, 1976
Personal computers coming on the market
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Pulse Oximetry
What is your O2 Saturation??
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Pulse Oximetry
Measurement of transmitted light through a translucent measuring site to determine oxygen saturation
Oxygen rich hemoglobin absorbs more infrared light
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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
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Pulse Oximetry
• 1983: Evaluation of Pulse Oximetry. (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)
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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
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JET Junctional Ectopic Tachycardia
1980 Electrophysiology
had few tools:
EKG’s
Pacemakers
Medications:
Digoxin
Beta blockers
Quinidine
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JET Junctional Ectopic Tachycardia
Uncommon form of SVT Low cardiac output and
death in 20-50% of pts.Described in 1980’sTransient postop issue in
infants with surgeries near the AV junctionEx: TOF, VSD
Difficult to manage, no medications
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JET Junctional Ectopic Tachycardia
Multifaceted Treatment Strategy (1985-95)
Fever control
Cooling
Procainamide
Later, use of Amiodarone, 1993
Deaths now uncommon
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What was Happening in Nursing?
• Importance of Patient Safety• Advanced Nursing Practice• Nursing Research
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Patient Safety
Creating Safe Passage
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“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
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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
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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
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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
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Patient Safety
Infections were the cost of doing business
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Patient Safety
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Advanced Nursing Practice
• Master’s Prepared Nurses in US
• 4 groups– Nurse practitioners– Clinical nurse specialists– Nurse Midwives– Nurse Anesthetists
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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
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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
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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 2008-09
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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
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Growth of NP Practice
• Changing Workforce needs– Decreasing resident and fellow hours– Decreasing number of fellows– Increased clinical demand– Increased specialization
• Lower cost of NP’s– Less costly education– Lower pay
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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
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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
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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
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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
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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 ProfessorUniversity of Pennsylvania SON
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Pediatric Pressure Ulcer Scale Braden Q
It began with a bed
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Pressure Ulcer Assessment Scale
Bergstrom, Braden, Laguzza, Holman, Nursing Research, 1987
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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
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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
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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 (1998-2004)
• 11 item (12 point) scale– Objective items, easily integrated into practice– Fewer items than previous scales, twice daily
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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
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Pediatric CV Nursing Research Pediatric Nursing Research, AHA, 2008
Literature Review, English, 1980-2008
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
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Pediatric CV Nursing Research
1980-89 1990-99 2000-080
10
20
30
40
50
60
70
80
# of studies
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Pediatric CV Nursing Research
1980-89 1990-99 2000-080
5
10
15
20
25
30
35
CV riskCHDTx
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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
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Pediatric CV Nurse ResearchersFirst 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
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What Hasn’t Changed
It is still about the children and families
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1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20120
200
400
600
800
1000
1200
1400
0%
1%
2%
3%
4%
5%
6%
CICU MortalityCY 1992-2012
Total # Patients Percentage
To
tal A
dm
iss
ion
s
% M
ort
alit
y
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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
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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
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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– ???????????????
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“When I want to understand what is happening todayOr try to decide what will happen tomorrow,I look back”
Omar Khayyem
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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
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Thank you!
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