Recap – Patient Engagement Tools

Take a look back at our Patient Engagement Tool posts.

 

The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, has implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Transition Top 10 to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home.  Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition.

 

 

Comprehensive Single Ventricle Road Map

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Cardiac Devices – Jarvik: For Smaller Hearts

PCHA’s next series introduces the various Cardiac Devices involved in the treatment of Congenital Heart Disease and the associated conditions. In the first post, Dr. Adachi tells us about the Jarvik for small hearts, a ventricular assist device used to help pump blood through the body. 

 

At our institution, we are working to create a smaller, implantable ventricular assist device
(VAD), specifically designed for small children. This device is called the Infant Jarvik VAD, named
for Dr. Robert Jarvik, the inventor of the first successful total artificial heart.

Why do we need this device?

In the world of pediatrics, most VADs are pulsatile, which means they pump like the heart.
However, these sometimes fail. This is why most adult VADs are now continuous flow pumps,
meaning they help push blood through the body using an impeller. Currently, there are no
pediatric continuous flow devices available for our smallest patients. We are hoping to change
that with a small, AA-battery- sized device.

It is more challenging to make a smaller pump with a favorable performance. After failing to get
FDA approval two years ago, Jarvik made significant design changes, and I came on board to test
the redesigned device in animals as a preclinical trial. The data we collected was much more
favorable than the previous testing, resulting in approval for a clinical trial by the FDA. The
Pumps for Kids, Infants and Neonates (PumpKIN) trial has just begun with seven major pediatric
heart centers in North America, including Texas Children’s Hospital, ranked #1 nationally in
pediatric cardiology and heart surgery by U.S. News & World Report.

Currently, hospitals across the country have limited options on the types of patients they can
support. For example, at Texas Children’s, we implant about 20 to 30 VADs each year. In many
of these cases, we have to use an adult device in a child, which inevitable causes patient-device
size mismatch. If the Jarvik infant pump becomes available, that may change device support
paradigms, leading to more potential candidates who can benefit from this implant at hospitals
nationwide.

 

 

Dr. Adachi has written extensively regarding surgical, morphological, and physiological aspects of congenitally malformed hearts. His clinical and research interests also include pediatric heart failure and mechanical circulatory support including ventricular assist device and total artificial heart. He is also studying cardiac cellular and sub cellular differentiation prior to and following application of mechanical assistance. He also has an interest in pediatric lung transplantation. For better preservation of donor lungs, he seeks to develop a pediatric-specific lung preservation device for deployment in the lung transplant program at Texas Children’s, which is the largest in the world.

Patient Engagement Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Teen Topics – The Top 10 Things to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home.  Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition and cap off, for now, PCHA’s Teen Topic Series.

TOP 10 THINGS TO REMEMBER

  1. Congenital heart disease requires lifelong follow-up
  2. Where operations were completed
  3. How to find a copy of all operative reports as available
  4. The current list of medications, especially blood thinners and rhythm drugs
  5. If they have a pacemaker or not, and a wallet card
  6. Whether they need antibiotics before dentist, tattoos, piercings and similar procedures
  7. What restrictions their heart disease places on activities they can do, and how that can affect jobs, etc
  8. Need to maintain health insurance whenever possible
  9. How to find a new doctor that specializes in their disease if they have to move
  10. Who to call if they have any questions or concerns

 

 

Congenital heart disease requires lifelong follow-up

Many patients with CHD feel well at this point in their life, and in many cases, without significant symptoms, they may not see the need to see a doctor.  There is a common misconception that CHD can be “cured” (which is possible in a very small minority of lesions).  Some conditions require follow-up more frequently than others.  The “transition” period is an especially risky time for teens to become “lost to follow-up” as they may not necessarily know how to make their own appointments, and may not know how to find a new doctor.

Please discuss with your CHD provider who they should be seeing as they become adults, and if your child has not seen a CHD provider in the last 12 months, now would be a great time for a quick visit to make sure your teenager has a better understanding of their specific problem and how frequently they need follow-up.

 

Where operations were completed / How to find a copy of all operative reports as available

Ideally, your family would already have a copy of all the operative notes from all surgeries, catheter procedures, pacemaker implantations, and electrical studies of the heart.  A great deal of time and unnecessary testing can be saved if you have a copy of this information. Knowing the exact history of what was done, who it was done by, where, and when can really help a new CHD physician rapidly identify the best strategies for follow-up for your child.

 

For example, it is very helpful to know what kind of artificial valve, as well as what size of valve, was implanted. It can help a CHD physician understand how long to expect the valve to last without replacement, as well as the likelihood of being able to replace it in the cath lab, versus being able to follow by just echocardiography or cardiac MRI imaging.

 

 


The current list of medications, especially blood thinners and rhythm drugs

If your child is on Coumadin to prevent a blood clot, this is incredibly important information.Likewise, rhythm control drugs are important to know about. Many of these drugs will have interactions with other new drugs that are commonly prescribed, for example, antibiotics.  In some cases it may be important to consider getting a medical bracelet for your loved one in case of emergency.

 

 

If they have a pacemaker or not, and a wallet card

A wallet card identifying the manufacturer of a pacemaker or defibrillator is very important, especially in case of emergency.  You don’t want to think about bad things happening to your loved one, but if they suffer an ICD shock and are temporarily unconscious and unable to speak for themselves, emergency personnel with access to this information will be much better able to care for your child.

Additionally, as patients move, they often will need to have one cardiologist for the “plumbing” and another for the “electrical work.”  It can save a lot of frustration to know ahead of time that a patient requires appointments with both types of cardiologists, and at most centers we can make arrangements for your loved one to see both types of cardiologists at a routine office appointment on the same day

 

 

Whether they need antibiotics before dentist, tattoos, piercings and similar procedures

Although endocarditis is rare, the consequences can be very severe. Guidelines changed about 10 years ago, but overall whether or not a patient needs endocarditis prophylaxis is a matter of clinical judgment. I advise you to ask your physician or other provider about this.

 

 

 

 

What restrictions, if any, their heart disease places on what type of activities they can do, and how that can affect jobs, etc

 

If your child is not allowed to lift heavy weights due to their condition, they should be steered toward a job that does not require heavy physical activity.  For the most part, pediatric cardiologists already do an excellent job with this type of counseling.

 

 

 

Need to maintain health insurance whenever possible

Fortunately, at least for the time being, CHD patients can remain on their parents’ medical insurance until they are 26 years of age.  This policy gives ample time for most patients to have a plan to have insurance for themselves, although there are exceptions.

Without insurance, many preventable things can’t be appropriately prevented.  Virtually no one can afford open-heart surgery, catheter procedures, or other major heart procedures out-of-pocket.  If your family does not have private insurance, please ask your care team for resources to learn how to find alternative insurance through Medicaid or other similar State programs.

 

How to find a new doctor that specializes in their disease if they have to move

A great resource on the web is the Adult Congenital Heart Association clinic directory, which can be found here.  This directory can be searched by each state and virtually every large city currently has a program listed on the website.  Contact information to help you make an appointment is available in this directory.

You should also discuss with your CHD care team which doctor they would recommend.  For some very complicated types of congenital heart disease, it may be important to determine where to move based on the availability of appropriate ACHD resources.  Of course, in many cases, patients may still continue to “go home” during summer and college breaks and continue to see their original cardiologists.

I would recommend that if a young adult with CHD lives more than a few hours away from their hometown that they should have at least a one-time “checking in” appointment at a local hospital or clinic, so that they can have their chart on file in the electronic medical record of the nearby hospital, mainly in case of emergency. Also have a plan in place for where to be transferred in case of a serious medical emergency.

 

Who to call if they have any questions or concerns

This may be the most important issue.  The default option in case of emergency is the emergency department; however in many cases, a timely call to the right person can save an unnecessary trip as well as a lot of frustration. You should discuss with your current CHD care team who to call in the future, and when.  Many routine and unexpected questions are going to occur throughout your child’s life, so knowing who to consider a “medical home” is quite valuable.

 

 

 

 

Dr. Kay is the Director of the Adult Congenital Heart Disease Program at Indiana University/Indiana University Health.  He is trained in both Adult Cardiovascular Medicine and Pediatric Cardiology.  He is originally from Huntington, Indiana and has degrees in Spanish and Engineering from Purdue University.  He completed training in Internal Medicine and Pediatrics at The University of Cincinnati/Cincinnati Children’s Hospital, and completed a dual fellowship in Adult Cardiology and Pediatric Cardiology at Nationwide Children’s Hospital and The Ohio State University.

 

Be #CHDWise and be a part of our Give a HOOT about CHD Campaign!

Here are a few key ways to join the movement:


Hello Echo!

We enlisted your help to name our cute, cuddly, and wise owl and boy did you deliver! With over 70% of the votes – we officially have a winner! With your overwhelming support, the name of the official mascot of The Pediatric Congenital Heart Association is hereby named Echo and we love him – Thank you for your participation!

 

 

 


Purchase an Owl

This adorable plush owl stands 8 inches tall. His fur is soft enough to melt anyone’s heart. The heart on his chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD. We will also be adding these owls to our existing care package program through our state chapters so they will included in select kits we provide to patients and families impacted by CHD.

Comfort a loved one, spread awareness, or simply show that you “Give a Hoot About CHD!” Echo can fly right to your doorstep by purchasing him from our online store or directly from the voting page!

 

Color with Echo

Break out the crayons, markers, colored pencils, or paint! Add color to the page and bring Echo to life! Now available, a printable coloring page to print out for the whole family to color as they wish.

Click the image or click here to Color with Echo!

Want to submit your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and email to Echo at Echo@conqueringchd.org


Success!

 

Our Give a HOOT booster campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1810 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference. Shirts will be delivered 2-3 weeks AFTER the campaign closed on 11-15-17

CLICK HERE to check out the shirts and view the supporters

 


Use your Social Media talents as we work to reach new families!

It’s your month to shine and show your friends and family what it means to be #CHDWise!

This year has been a great year and our social media following has grown exponentially, allowing us to reach more families than ever before. We’re currently at 16,000 likes on our facebook page and we would love to be sitting at at least 16,500 followers by the end of the month! The more patients and families our message can reach, the greater the impact that we can have.

Join the Social Media Storm

During this month help us cover social media with CHD facts and faces. Like, share, comment and tag using the hashtag #CHDWise.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes throughout the month.

Make it personal – Using the hashtag #CHDWise, share stories and photos about about how you and your family are #ConqueringCHD. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can educate everyone to be #CHDWise. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button iglogocolor

Encourage your Members of Congress to be #CHDWise

Tell your representatives why they should give a hoot about CHD!  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


Check out what’s happening in your neck of the woods

Help improve the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.  Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time. Get connected to a chapter near you.

 

 


Mark your calendars

 

#GivingTuesday is a day that the world recognizes the importance of giving back.

This global day of giving follows Black Friday and Cyber Monday and encourages communities to contribute to their favorite nonprofits and help kick off the giving season!

It’s a great way for us to reach new audiences who may not be familiar with our  mission.

Our mission is to Conquer Congenital Heart Disease. We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.

Give Knowledge. Give a Voice. Give Hope.

 


Finally, Celebrate how #CHDWise you are and all we are doing, together, to Conquer CHD! Don’t forget to use the hashtag #CHDWise when you share your stories and pictures