Transcript This Week at the Children`s Museum

How to Build an ACHD Clinic:
Lessons from the Children’s Museum
Manisha S. Patel, MD
Pediatric Cardiologist
Director of the GHS ACHD Clinic
May 15th, 2015
A week ago…
A week ago…
A week ago…
Email……
This week at the Children’s Museum….
A week ago…
Email:
This week at the Children’s Museum….
How to build an ACHD Clinic
How to build an ACHD Clinic
Need for specialized ACHD care
Importance of appropriate transition of
care for these patients
 Lessons from the Children’s Museum
Changing (Aging) Face of CHD
CHD affects 1:120 US children
In South Carolina
♥ 500 children with CHD born each year
♥ > 8000 Adults with CHD,
most of whom are NOT in care…
Changing (Aging) Face of CHD
CHD affects 1:120 US children
In South Carolina
♥ 500 children with CHD born each year
♥ > 8000 Adults with CHD,
most of whom are NOT in care…
Young Adults
with Special Health Care Needs
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1/10 with asthma
1/150 with congenital heart disease
1/300 with diabetes
1/450 will be a cancer survivor
Young Adults
with Special Health Care Needs
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•
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1/10 with asthma
1/150 with congenital heart disease
1/300 with diabetes
1/450 will be a cancer survivor
The Changing (Aging)
Face of CHD
Ready or not…
Ready or not…
Here they Come
Success and Survival
Mortality in Young ACHD
When they Die and Why?
Morbidity in Young ACHD
Hospital Admissions:
Age> 30…
Lapse of Care
Predictor for Morbidity
• Lapse of care > 2 years (63% of patients)
• 3 times more likely to need urgent intervention
• Median duration was 10 years (2-50 years)
How to Build an ACHD Clinic
Lesson 1 from the Children’s Museum
How to Build an ACHD Clinic
Lesson 1 from the Children’s Museum
How to Build an ACHD Clinic
Lesson 1 from the Children’s Museum
You need a keystone
to build a bridge.
How to Build a Clinic:
Start with a bridge.
Keystone = Holds the arch together
ACHD Care Team
Pediatrician (or Med/Peds)
Pediatric Cardiologist
Other subspecialties
Geneticists
EP Doctors
Internist (or Med/Peds)
Ob/Gyn
Anesthesiologist
Surgeons
Dentists
How to Build a Clinic:
Start with a bridge.
ACHD Care Team
Pediatrician (Med/Peds)
Internist (Med/Peds)
Pediatric Cardiologist
Ob/Gyn
Other subspecialists
Anesthesiologists
Geneticists
Surgeons
EP Doctors
Dentists
How to Build a Clinic:
Start with a bridge.
ACHD Care Team
Pediatrician (Med/Peds)
Internist (Med/Peds)
Pediatric Cardiologist
Ob/Gyn
Other subspecialties
Anesthesiologist
Geneticists
Surgeons
EP Doctors
Dentists
How to Build a Clinic:
Start with a bridge.
ACHD Care Team
HOW IS THE WEIGHT DISTRIBUTED?
Transfer to Care
ACHD Care Team
Pediatrician (Med/Peds)
Internist (Med/Peds)
Pediatric Cardiologist
Ob/Gyn
Other subspecialties
Anesthesiologist
Geneticists
Surgeons
EP Doctors
Dentists
Transition Visits
• Invitation to visit the ACHD Clinic
• Meet the ACHD team
• Receive a map of how to get to the clinic
After transfer
• No further appointments in pediatrics services
• Limit patient (parent)/pediatric provider contact
after directing questions to primary ACHD MD.
How to Build an ACHD Clinic
Lesson 2 from the Children’s Museum
The more the pieces,
the harder it is to keep
the puzzle together.
CHD Diagnosis &
Surgery
Lifestyle &
Exercise
Young
Adult
Insurance &
Work
Cognitive &
Emotional
Well Being
Jigsaw Puzzle (Age Based)
• Ages 2 to 3: < 12 pieces
• Ages 6 to 7: 100 - 200 pieces
• Ages 12 and up: 500+ pieces
What about jigsaw puzzles for adults?:
Adults generally prefer jigsaw puzzles with
500+ pieces
Jigsaw Puzzle (Complexity)
Simple Child’s Puzzle (12 pieces)
Moderately Complex Puzzle (500 pieces)
Greatly Complex Puzzle (1000 pieces)
Putting Pieces Together
What’ s your technique?
Putting Pieces Together
What’ s your technique?
(1) Find the four corner pieces
(2) Find the straight edged pieces
(3) Sort the middle pieces by color/picture
(4) Use the picture on the box as a guide
Corner and Edge Pieces
(1) CHD Diagnosis / Surgery Knowledge
(2) Insurance / Work
(3) Lifestyle / Exercise
(4) Cognitive / Emotional Well Being
A Teen Should …
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Describe diagnosis or condition
Medical history
Name medications
See the doctor alone
Answer and ask questions
Make Appointments and Ask for Refills
What makes adults with
CHD so special?
• High morbidity & mortality in young adult years
• Close observation can improve survival.
• Family Planning & Inheritance issues
Morbidity and Mortality:
What are we worried about…
Morbidity and Mortality:
What THEY are worried about…
Pregnancy?
Insurance?
Work?
Endocarditis?
Another Surgery?!
Morbidity and Mortality:
What THEY are worried about…
Pregnancy?
Insurance?
Work?
Endocarditis?
Another Surgery?!
Morbidity and Mortality:
Why are they here?
Pregnancy?
Insurance?
Work?
Endocarditis?
Another Surgery?!
Morbidity and Mortality
Why are they here?
Pregnancy?
Insurance?
Work?
Endocarditis?
Another Surgery?
How to Build an ACHD Clinic
Lesson 3 from the Children’s Museum
Make Friends,
Communicate, and
Compromise.
How to Build an ACHD Clinic
Build your team.
.
One specialist
One PCP
One phone call at a
time.
ACHD Teams
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Building a clinic takes time
Building the network takes longer.
ACHD can form a small, supportive network
Most patients require many adult subspecialists
• Secret:
– Adult subspecialists have to be interested (or bored) to
be fully engaged in the care team.
How to Build an ACHD Clinic
Once you have some
key players in place,
everything starts to
come
together
.
ACHD
• ACHD outpatient care can be delivered in
either a pediatric or adult health care setting
• The staff at the pediatric hospitals are
uncomfortable taking care of complex ACHD
inpatients.
• The staff at adult hospitals often lack the
knowledge base to manage complex ACHD
inpatients.
Where are the million ACHD
patients?
I don’t need care…
“ I was ‘fixed’ ‘ repaired’ ‘cured’”
Drop out of medical care and present as adults with significant
morbidities
Where are the million ACHD
patients?
I don’t need care…
“ I was ‘fixed’ ‘ repaired’ ‘cured’”
Drop out of medical care and present as adults with significant
morbidities
I know I need care, but…
“I don’t have insurance. Thought I was covered under my
parents’ insurance till I turn 40”
Skip check ups and stop taking medications
Where are the million ACHD
patients?
I don’t need care…
“ I was ‘fixed’ ‘ repaired’ ‘cured’”
Drop out of medical care and present as adults with significant
morbidities
I know I need care, but…
“I don’t have insurance. Thought I was covered under my
parents’ insurance till I turn 40”
Skip check ups and stop taking medications
I know I need care, but…
“ Not sure what I had done, but I have tons of scars and don’t
want more”
Concerned about future surgeries and advice regarding pregnancy
Factors that Affect Transition
JG Reiss Pediatrics 115,2005
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Cognitive ability of the young adult
Progressive nature of the SHCN
Insurance Funding
Availability of providers
Decentralized Care
ACHA
• Founded in 1998
• Forum for patients, cardiologists, allied health
professionals, centers
• Active lobbying force/public awareness
• Provides patient education, contact with
institutions for “lost” patients
GHS ACHD Clinic
Greenville has built another bridge…
Essential to care for these complex patients
Alllows for safe transfer from pediatric to adult care
Practical tips for ACHD Patients
From Yogi Berra:
" You can observe a lot by watching "
The scars tell the story
The scars tell the story
“When kids used to ask me about the scar
on my chest, I would say that I have a
broken heart and the doctors had to take
it out and fix it and they cut open my
chest…
K.C. Heartwaves.org
Practical tips for ACHD Patients
From Yogi Berra:
" You can observe a lot by watching "
• Focus on most common complications
Practical tips for ACHD Patients
From Yogi Berra:
" You can observe a lot by watching "
• Focus on most common complications
• If something doesn’t make sense, ask for help.
– Email: [email protected]
– Cell: 864-546-0046 (Please Call!)
Adults with congenital heart disease
• Because of the success of prior interventions,
survival to adulthood is expected.
• Many will need additional surgeries in young
adult years
• Many were told they were “cured”
• Don’t believe everything your mother told you!
Adults with congenital heart disease
• Because of the success of prior interventions,
survival to adulthood is expected.
• Many will need additional surgeries in young
adult years
• Many were told they were “cured”
• Don’t believe everything your mother told you!
(unless you’re my children)
The scars tell the story
Planned Transition
Programs are essential
to avoid losing patients
.
Create a Transition Plan
• Pediatric cardiologists could provide a written transfer plan to
patients & families
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Anatomy
Prior surgeries
Medications, drug interactions
Lifestyle planning:
• exercise, contraception, pregnancy, career planning, travel, and insurance
– Alcohol, smoking
– Process should occur over multiple visits
•
Ideal: Transition Visit between Pediatric/Adult Provider
So My Heart Isn’t Fixed?
Long Term Outcomes
• Predicted outcomes are different based on the
period of history their
• Evolving with changes in diagnosis and treatment
• With improved access to care, ACHD patients are
living longer than ever before
If you build it they will
come…
THRIVE:
GHS Teen and Adult CHD Clinic
Started August 2011
Marketing/Outreach
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Focus Magazine (2014)
Inside Health Article (2013)
Belle Magazine (2013)
WYFF Carol Goldsmith (2014)
Jump Rope for Heart (2014)
Monarch Elementary “Meet your Provider” (2013)
WORD Radio: ACHD Piece (2014)
TOWN Magazine (2014)
WYFF Emerson Rose Act (2013)
Outreach/ Education
June 24th, 2014
The Adult Cardiologist’s Guide to Caring for ACHD Patients
Upstate Cardiology (invited by sonographers and MD)
June 2014
Focus Magazine Story on ACHD Clinic as a Model for Transition of Care
May 19th, 2014
“ The Myth of a Cure: A Growing ACHD Population”
Oconee Medical Society
May 17, 2014
“Pregnancy and the ACHD Patient”
Adult Congenital Heart Disease in the 21st Century
May 16th, 2014
“I want to Push” Aortic dilation in pregnant patients with CHD: Review of GHS experience
Mid-Atlantic Regional ACHD meeting:
Outreach/ Education
May 3, 2014
GHS Swamp Rabbit Run – With Pediatric Cardiology Staff
Mar 22, 2014
“ACHD Potpourri”
20th Annual Pediatric Echocardiography Conference; Children’s Healthcare of Atlanta; Emory
Mar 1st,2014
WYFF Carol Goldsmith Interview on ACHD Clinic
February 2014
UPSTATE PARENT MAGAZINE : Article on the ACHD Clinic
February 8th, 2014
WORD on Health – Radio Piece on the ACHD Clinic
Jan 25th, 2014
“ The Myth of a Cure: A Growing ACHD Population”
GHS Cardiology Symposium
October 9th, 2013
TOWN MAGAZINE GHS SPONSORED EVENT – Dr. M. Patel and Dr. A. Bryan
Nov 8, 2013
“The Role of Med/Peds in Caring for our ACHD Population”
Annual GHS Med/Peds Conference
Feb 8, 2013
“Transition of Youth with Special Health Care Needs”
GHS Department of Pediatrics Grand Rounds
Referrals to Clinic from
Cardiology Consultants, PA (Spartanburg)
MFM/ OB/Gyn
Pediatric Cardiology (GHS)
EP ( UMG; AnMed; Upstate)
Upstate Cardiology
Carolina Cardiology
Local Primary Doctors
Foothills Cardiology
AnMed Cardiology
Oconee Heart Center/ER
SC Cardiology Consultants (Seneca)
Charlotte/ MUSC
Self-Referrals (Columbia/Southern Georgia)
GHS ACHD Clinic Volumes
1600
1400
1274
1348
1200
1000
851
838
800
600
Adult Cases
Pediatric Cases
479
400
200
0
0
Fiscal Year
2012
Fiscal Year
2013
Fiscal Year
2014
Based on Rate
through End of
April 2014
GHS vs US ACHD Clinics
Care of the adult congenital heart disease patient in the United States: a summary of the
current system. 2010 May;31(4):511-4. Patel MS1, Kogon BE.
Number (%)
Adult Congenital
Visits/year
Cardiologists
Total nationally
# per program
1000
Median (Range)
415 (30-2880)
203.5
3 (0-12)
851
415
500
0
GHS ACHD Visits
US Median
Adult Cases/Year
How They Touch the System
Pregnancy
How They Touch the System
Pregnancies
Cardiac
Surgery
Cath
+ Child
with CHD
Primary
Care
Payor Mix for
ACHD Population
MEDICARE HMO 0%
2%
MEDICARE
2%
0%
CHARITY
8%
OTHER
3%
COMMERCIAL
1%
MEDICAID HMO
19%
MANAGED CARE
37%
MEDICAID
28%
Excludes ‘self-pay’ and ‘ 100% reserved’.
GHS ACHD Program
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Profitable & Strategically Valuable Program
Relatively low direct cost
High contribution margin %
Favorable payor mix
Downstream Revenue
Future Direction and Growth
Immediate Expansion (< 6 months)
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Research/ Registries
- Invited to co-author a paper on Building successful ACHD Clinics
- Create multi-center registry to follow outcomes in our Pregnant
- Case Reports
- Quality Improvement Projects
Resident Training
• IM Adult Cardiology (Lee Taylor)
• Med/Peds Cardio Rotation
National Advocacy – 2 Local Patients as ACHA Ambassadors
Future Direction and Growth
Expansion over next 1-2 years
•Expand Adult Clinic Outreach
•Formalize a transition program
•Centering Groups
•Addition of mid-levels and/or physicians to the clinic
Awareness & Compassion
To live life fully is to live with both in every moment.