A week ago… - Health Sciences Center home

A week ago… - Health Sciences Center home

How to Build an ACHD Clinic: Lessons from the Childrens 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 Childrens Museum. A week ago Email: This week at the Childrens 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 Childrens 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

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

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 Childrens Museum How to Build an ACHD Clinic Lesson 1 from the Childrens Museum How to Build an ACHD Clinic

Lesson 1 from the Childrens 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 Childrens Museum The more the pieces, the harder it is to keep

the puzzle together. CHD Diagnosis & Surgery Lifestyle & Exercise Young Adult

Cognitive & Emotional Well Being Insurance & Work 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 Childs 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

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 Childrens 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

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 dont 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 dont 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 dont 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 dont 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 dont 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 dont want more Concerned about future surgeries and advice regarding pregnancy

Factors that Affect Transition JG Reiss Pediatrics 115,2005

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 doesnt 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 Dont 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 Dont believe everything your mother told you! (unless youre 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

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 Isnt 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

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 Cardiologists 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; Childrens 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 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 Median (Range) 415 (30-2880) # per program 203.5

3 (0-12) 851 1000 800 415 600 400

200 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 1.67% HMO; 1.66%

MEDICARE; COMMERCIAL; 1.05% OTHER; 2.62% CHARITY; 8.47% MEDICAID HMO; 19.03% MANAGED CARE;

37.05% MEDICAID; 28.45% Excludes self-pay and 100% reserved. GHS ACHD Program

Profitable & Strategically Valuable Program Relatively low direct cost High contribution margin % Favorable payor mix Downstream Revenue Future Direction and Growth

Immediate Expansion (< 6 months) - - 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.

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