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Pediatric Outpatient Management of ToF Post Repair. Andrew S. Mackie, MD, SM Division of Cardiology Stollery Children ’ s Hospital. Objectives. Describe the late complications that can occur in repaired ToF patients Summarize the indications for outpatient investigations in this population.

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pediatric outpatient management of tof post repair

Pediatric Outpatient Management of ToF Post Repair

Andrew S. Mackie, MD, SM

Division of Cardiology

Stollery Children’s Hospital

objectives
Objectives
  • Describe the late complications that can occur in repaired ToF patients
  • Summarize the indications for outpatient investigations in this population
outline
Outline
  • Complications post ToF repair
  • Loss to follow-up
  • Existing guidelines
  • Quality metrics
why follow these patients
Why follow these patients?
  • Anticipate and monitor potential complications
  • Intervene early
  • Provide patient education
  • Advice on maintaining a healthy lifestyle
    • Physical activity
    • Smoking cessation
    • Contraception and pregnancy
tof late cardiac complications
Tricuspid regurgitation

RV dysfunction

LV dysfunction

Congestive heart failure

Endocarditis

Arrhythmias

Sudden death

ToF: Late cardiac complications
  • Pulmonary regurgitation RV volume overload
  • Residual RVOTO
  • Branch pulmonary artery stenosis or hypoplasia
  • Residual VSD
  • Aortic root dilation/ aortic regurgitation
tof non cardiac challenges
ToF: Non-cardiac challenges
  • School and academic difficulties
  • 22q11 deletion (15% of ToF patients)
  • Insurance and employability
  • Exercise limitations
  • Lack of knowledge about their heart
  • Need for transition and transfer to adult cardiology care
  • Pregnancy
  • Genetic implications, need for counseling
arrhythmias
Arrhythmias

What?

Isolated PVCs

Non-sustained VT

Sustained VT 10%

Atrial flutter 30%

Atrial fibrillation

AV block

Why?

Surgical incisions, e.g. ventriculotomy

Abnormal hemodynamics, e.g. RV volume overload, TR

arrhythmias treatment
Arrhythmias: Treatment

Correct abnormal hemodynamics where possible

E.g. pulmonary valve replacement

Consider intraoperative ablation

Catheter ablation

Consider AICD for high-risk patients

QRS duration >180 msec, non-sustained VT, inducible VT, previous palliative shunt, RV/LV dysfunction, fibrosis, history of syncope or cardiac arrest

Antiarrhythmic therapy?

sudden death
Sudden death

0.15-0.25%/ year

Mechanism presumed to be VT in most cases

Risk stratification remains imperfect

Standard clinical variables:

Age at repair, chronological age, prior palliative shunt, recurrent syncope, PR, residual RVOTO, severe RV enlargement, RV or LV dysfunction, VT, QRS > 180 msec

“Advanced” variables:

Positive V stim study (EP lab), PR fraction on MRI

exercise
Exercise

Good hemodynamics:

No restrictions

Poor hemodynamics:

Low intensity activities/sports

Avoid isometric exercise

Walking is OK for everyone!

Eur Heart Journal 2010;31:2915

pregnancy
Pregnancy

Low risk if good hemodynamics

High risk if:

Significant residual RV outflow obstruction

Severe TR or PR with RV volume overload

Recommendations:

Preconception cardiology counseling re: pregnancy risk

Genetic counseling especially if 22q11 deletion

ACHD care during pregnancy

CHD recurrence risk 4-6%

fetal echocardiogram

follow up
Follow-up

Eur Heart Journal 2010;31:2915

loss to follow up
Loss to follow-up
  • How big a problem is this?
  • At what ages?
  • Risk factors?
  • How can we mitigate this problem?
slide18
Only 47% of young adults with moderate or complex CHD were seen at a Canadian ACHD centre within 3 years of graduating from SickKids

Predictors of ACHD attendance were:

cardiac surgical procedures in childhood

older age at last pediatric visit

documentation in chart of need for follow-up

Reid GJ et al. Pediatrics 2004

slide19
Among a subset (n= 234) who completed questionnaires, predictors of ACHD attendance were:

Having co-morbid conditions

Not using substances

Compliance with dental prophylaxis

Attending cardiac appointments without parent or siblings

Documentation in chart of need for follow-up

Reid GJ et al. Pediatrics 2004

slide20

Loss to follow-up during childhood

Mackie AS et al. Circulation 2009

slide21
Case- control study using mixed-methods:

Medical records review

Structured telephone interviews

Cases: lost to follow-up > 3 years

Controls: matched by year of birth and CHD lesion

Risk factors:

No documentation in chart of need for follow-up

Lower family income

No cath within past 5 years

Lack of awareness of the need for follow-up

Mackie et al. Cardiol Young 2011

slide22

Gurvitz et al. JACC 2013

  • 992 subjects at 12 U.S. ACHD centers
    • Recruited at 1st presentation to ACHD clinic
  • Mean age at first gap: 19.9 years
  • 42%: gap in cardiology care > 3 years
  • 8%: gap in care > 10 years
  • Clinic location influenced gap in care
u k data
U.K. Data

Wray et al. Heart 2013

u k data1
U.K. Data

Wray et al. Heart 2013

loss to follow up consequences
Loss to follow-up: Consequences?

Colorado:

158 adults with moderate-complex CHD

63% had a lapse in care of > 2 years since leaving pediatric center

Most common cited reason: patient had been told “no need for follow-up” (32%)

Those with lapse of care more likely to require surgical or catheter intervention within 6 months (OR 3.1, p= 0.003)

#1 re-intervention was PVR

Yeung et al. Int J Cardiol 2008

existing guidelines
Existing guidelines

Cong Heart Dis 2006;1:10-26

  • Based on “consensus meetings” held at CHOP

 Review of literature

 Clinical experience of group members

slide32
All ToF patients should have (at a minimum):

A thorough clinical assessment

ECG

Rhythm, QRS duration

CXR

Echocardiogram

RVOTO, PR, RV size and function

Branch PA size

Residual VSD

Aortic root size and AR

LV function

slide33
ToF patients mayalso require:

MRI

PA size, PR fraction, RV size and function

CT if contraindication to MRI

Exercise testing

Functional capacity, exertion-related arrhythmias

Holter monitor or event recorder

Lung perfusion scan

Cardiac catheterization

EP study

Diagnostic intervention of flutter, VT

Risk stratification for sudden death

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