Quality of Care for the ACHD Patient in the Emergency Room

Quality of Care for the ACHD Patient in
the Emergency Room
Julie A. Kovach, MD, FACC, FASE
Co-Director
Rush Adult Congenital Heart Center
(presentation for Surviving CHD group at CCHMC
May 20, 2015 by Nicole Brown, MD)
Yes…these slides are borrowed
(Credit to Dr. Kovach!) …
with some minor additions
You want me to go to the Emergency Room?????
Patient Experiences with Non-ACHD Doctors
I told them my left and right ventricles were reversed. The
(doctor)…stated that this doesn’t matter since “the left and right
ventricles are the same.”
This is a recurrent conversation that I have with medical staff, especially
in the emergency room:
“Why are you here today?”
“I have a congenital heart defect.”
“Okay, what is it?”
“A vascular ring”
“Oh…okay (pause)...so is it metal? When did you have it put in?”
“How long have you had a congenital heart defect, Mrs. J?”
From the discussion forums on ACHAheart.org
American Journal of Cardiology. 2007;99:839–843.
How Likely is an ER Visit for an ACHD Patient?
• 22,096 CHD patients aged ≥ 18 years (42% men)
•
•
•
•
Quebec provides universal access to care, universal
insurance
All patients are assigned a unique health care
number at birth
All patients had ≥ 1 ICD-9 diagnosis code for
congenital heart disease or a procedure code for a
CHD operation by a cardiovascular surgeon from
1983-2000
Alive in 1996, followed until 2000
Mackie AS et al., Am J Cardiol 2007;99:839-843
Patient Characteristics
• 8% (1765) patients had severe CHD
• Median age
• 30 years in the severe group vs. 44 years in the
mild to moderate group (p<0.0001)
• Survival from 1996-2000
• 7.6% (1682) patients died
Mackie AS et al., Am J Cardiol 2007;99:839-843
Health Care Resource Utilization, 1996-2000
Health Care Service
Number of patients (%)
Median (IQR)
General practitioner outpatient visits
20,131 (91.1)
15 visits (7-27)
Cardiologist outpatient visits
12,113 (54.8)
4 visits (2-8)
Specialist (non-cardiologist) outpatient visits
19,276 (87.2)
10 visits (4-22)
Emergency department visits
14,994 (67.9)
3 visits (1-6)
Hospitalization
11,332 (51.3)
9 days (4-26)
3,536 (16.0)
5 days (3-10)
Critical care (ICU)
Mackie AS et al., Am J Cardiol 2007;99:839-843
Admissions to the Hospital from the ED
• Hospital admissions of CHD patients ≥ 18 years with
an ICD-9 diagnosis code for CHD in the U.S.
•
•
Nationwide Inpatient Sample (NIS), public all-payer
database with data on 7-8 million hospital discharges
Analyzed yearly from 1998-2005
• Number of hospital admissions for ACHD increased
(more than doubled)101.8% between 1998 and 2005
•
35,992 ± 2645 in 1998 to 72,656 ± 5258 in 2005
• 41.7 ± 0.8% admissions came from the emergency
department
•
Not different from 1998 to 2005
Opotowsky AR et al., J Am Coll Cardiol 2009;54:460-7
Admissions Via the ED During Transition from
Adolescence to Adulthood
• Patients age 12-44 years with CHD hospitalized
in California from 2000-2003
• Dataset provided by the California Office of
Statewide Health Planning and Development
(OSHPD)
• Evaluated the source of hospital admission,
patient age, complexity, type of insurance, etc.
Gurvitz MZ et al., J Am Coll Cardiol 2007;49:875-82
CHD Patient Age and Hospital Admissions Via the ED
Percentage of
admissions via the ED
doubled in the transition
from adolescence to
adulthood
Predictors of admission
via the ED were age
>17 years and public or
no insurance
Percentage of
admissions through the
ED increased from 2000
to 2003
Gurvitz MZ et al., J Am Coll Cardiol 2007;49:875-82
ER Admits for CHD vs. Non-CHD Patients in 2000
Young adults with
CHD are twice as
likely to be admitted
to the hospital via the
ED than those without
CHD
Difference disappears
by age 42
Percentage of ED admits
of non-CHD patients
 Percentage of ED admits
of CHD patients
Gurvitz MZ et al., J Am Coll Cardiol 2007;49:875-82
American Journal of Cardiology. 2008;101:521–5.
What Exactly Are These Emergencies?
• Multicenter study
• 5 hospitals in Germany and Switzerland
• 1033 total admissions to hospital of CHD
patients ≥ 16 years over a 12 month period
• 201 (19.5%) were emergency admissions (160
patients admitted 201 times)
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
Patient Characteristics
• 83 (52%) patients were men
• Mean age at time of admission was 31.8 ±
13.6 years
• 112 (70%) patients had undergone ≥ 1 prior
cardiac operation
• Average interval between last operation and
emergency was 10.5 ± 8.3 years
• 70% of patients were functional class I or II
before illness that caused ER admission
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
Primary Congenital Cardiac Diagnoses
Diagnosis
Group
Cardiac Defect
Patients
N (%)
Admissions
1
Single ventricle
35 (22%)
45
2
Tetralogy of Fallot +
truncus arteriosus
28 (17.5%)
43
3
TGA + TAPVR
24 (15%)
28
4
ASD ± PAPVR
21 (13%)
24
5
VSD + AP window + PDA +
Eisenmenger’s
19 (12%)
26
6
LVOT obstruction + coarct
10 (6%)
10
7
RVOT obstruction
4 (2.5%)
5
8
Others
19 (12%)
20
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
Clinical Manifestations of Emergencies
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
Reasons for Emergency Admission
Most emergency admissions are for cardiac causes
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
Outcomes of Emergency Admissions
• 45% patients required collaboration with at least
one non-cardiac specialist
• 28% were admitted to the ICU for mean 9 ± 23
days
• 19% underwent cardiac surgery
•
Valve replacement, endocarditis surgery, aortic
dissection, pacemaker/ICD, etc.
• 1.9% listed for heart or heart lung transplant
• 7.5% died during hospitalization
Kaemmerer H et al., Am J Cardiol 2008;101:521-525
ACC/AHA Guidelines for Access to Care
Healthcare for ACHD patients should be coordinated by
regional ACHD centers of excellence that would serve as a
resource for the surrounding medical community, affected
individuals, and their families.
I IIa IIb III
Every academic adult cardiology/cardiac surgery center
should have access to a regional ACHD center for
consultation and referral.
I IIa IIb III
Each pediatric cardiology program should identify the
ACHD center to which the transfer of patients can be
made.
I IIa IIb III
All emergency care facilities should have an affiliation
with a regional ACHD center.
22
Are Emergency Physicians Ready for ACHD?
• Survey of emergency medicine training programs
in US and Canada
• 134 General (adult) Emergency Medicine
residency programs
• Response rate 64%
• 64 Pediatric Emergency Medicine fellowship
programs
• Response rate 77%
Cross KP and Santucci KA, Pediatric Emergency Care 2006;22:775-781
Survey Results
• Does your center have an outpatient “adult
congenital heart” clinic to which adult
patients are referred for routine care?
• 43% programs surveyed didn’t know/were
unsure
• How many ACHD patients do your trainees see
per year?
• 75% programs said each trainee saw 0-5 ACHD
patients/year
Cross KP and Santucci KA, Pediatric Emergency Care 2006;22:775-781
EM Residency Program Directors’ Opinions
Compared with other priorities in your training program,
how important is “adults with congenital heart disease?”
Cross KP and Santucci KA, Pediatric Emergency Care 2006;22:775-781
EM Residency Program Directors’ Opinions
How comfortable are you that your residents currently
graduate with solid training in this area?
Cross KP and Santucci KA, Pediatric Emergency Care 2006;22:775-781
You want me to go to the Emergency Room?????
ACHD Patient Approach to an ED Visit
• What things should prompt a visit to the ED
vs. a visit to your doctor’s office?
• Which ED should you go to?
• What you should know before you go?
• What should you bring with you?
• What are important things to tell the ED
doctor to watch out for?
• When should you stand your ground?
Symptoms that Should Make You Think About
Going to the ED
• New or different chest pain
•
Especially if it feels like your chest is “ripping” or “tearing” or
there is pressure in the chest
• New or different shortness of breath
• Fast or skipping heart beat that doesn’t resolve within
20-30 minutes or is associated with dizziness or fainting
• Any fainting or passing out
Symptoms that Should Make You Think About
Going to the ED
• Abnormal or large bleeding from the chest, mouth, nose
or other places, especially if it does not stop or if you
take coumadin
• Any new or unusual pain anywhere that does not
resolve
• Any concern for a stroke
Which ED Should You Go To?
• Possibilities include the closest facility, an adult hospital,
a pediatric hospital, or the hospital where your ACHD
specialist works.
• For severe chest pain or shortness of breath or fainting,
call 9-1-1 and/or go the nearest ED.
• If you think it might be heart-related, i.e. a rhythm
problem, heart failure, unexplained fever
(endocarditis?), shortness of breath…you can come to
CCHMC ED for that and let them know you’re an ACHD
patient.
•
Good to let us know you are coming if you have time, but
don’t wait on us to call back if it is a true emergency…just go!
Which ED Should You Go To?
• For non-cardiac issues, it’s probably better to go to an
adult hospital. If they need help sorting out your
cardiac issues, you can always have them call us.
• Unless emergent, it’s best to ask any outside provider
to call us before you have any type of major sedation
or procedure.
• Before you travel, check ACHAheart.org and write
down the phone number of the nearest ACHD
program to your destination to take with you.
What Should You Know Before You Go?
• Your congenital cardiac diagnosis and all surgeries
you have previously had for your heart. In one
survey, only 60% of ACHD patients could
accurately name or describe their congenital
heart defect
• “I had a hole in my heart” or “I’m not sure but
my mom knows what it is” don’t cut it.
• The names and dosages of all of your medications
• Your allergies
• The name and emergency phone number of your
ACHD specialist
What Should You Bring With You to the ED?
• Your ACHA Personal Health Passport
• A list of your medications, or the pill bottles
themselves
• Any healthcare records that you have in your
possession including an EKG (ECG), hospital
summaries, CDs of imaging studies
• A friend or family member for support
• Your cellphone with your ACHD doctor’s
phone number in the Contact List
Things to Tell the ED Staff to Watch Out For
• If you have had a classic Blalock-Taussig shunt, tell them
NOT to take your blood pressure on the arm that had the
shunt.
• That you are on blood thinners (warfarin, aspirin,
dabigatran, etc.) before they draw blood
• If you have a fever, they should draw blood cultures
BEFORE giving antibiotics
• That heart rhythm problems may be more serious in you
than in other patients
Things to Tell the ED Staff to Watch Out For
• If you have cyanotic congenital heart disease (are blue;
low oxygen saturations), all substances put in your IV
(including saline flushes, etc.) must be passed through a
blood filter before it gets to the IV
• Ask about side effects of any medication they plan to give
you and any possible interactions with your heart
medications (especially warfarin, amiodarone, digoxin,
verapamil, diltiazem, and other heart rhythm meds)
• The emergency room doctor must talk to your ACHD
specialist before any projected surgeries or invasive
procedures
When Do You Stand Your Ground?
• If your symptoms are not getting better or are
worsening with the treatment you are given.
• If an emergent invasive procedure or
operation is planned.
• If you have any questions about the diagnostic
tests ordered or the results of these tests or
about the treatments you are given.
CCHMC ACHD Contact Info
• AACHD Clinic Phone: 513-803-2243 (during day)
• Operator: 513-636-4200 (after hours; ask for Adult
Congenital Heart Disease doctor on call)
• Fax: 513-803-0079
• INR (Anticoagulation) Fax: 513-636-0365
• E-Mail (not for urgent issues): [email protected]
• AACHD Clinic Scheduling: 513-636-2158
• General Scheduling (all clinics, testing, radiology):
513-636-3200
ACHD Cardiologists
Gary Webb, MD
Gruschen Veldtman,
MBChB
Chris Learn, MD
ACHD Advanced Fellow
Nicole Brown, MD
ACHD Nurse Practioner
Martha Tomlin, CNP
Our Star Players
Kathy
Gosney
Jennifer
Goodall
Social
Worker
Registration
Care Manager
Emily
Davis
Merk
Coordinator;
Project
Manager
Clinic
Nurse
Terry
Faulkner
Jenna
Faircoth
Program
Manager
Pharmacist
ACHD Primary Care and Transition
Jennifer Shoreman, MD
Med-Peds
Karen Day, RN