Improving the experience of receiving a Ventricular Assistive Device (VAD)

550,000 new cases of heart failure are diagnosed each year. Yet only 2,500 Americans have a Ventricular Assistive Device (VAD) implanted to prevent heart failure. We worked with the Mayo Clinic in Minnesota to improve the experience of receiving a VAD.

Advanced Heart Failure

Many patients opt to have a Ventricular Assistive Device (VAD) implanted as either a bridge to a transplant, or as their permanent, destination therapy.

VAD: Ventricular Assistive Device

The VAD is a complex and holistic system which consists of internal & external components:

Pump
Driveline
Power Sources and Controller

Improving the Experience of receiving a VAD with the Mayo Clinic Committee

OBSERVATIONS
We shadowed patients visiting the VAD clinic, and participated in patient advocacy workshops sponsored by the leading manufacturer of VADs.

STAKEHOLDER INTERVIEWS
We also spoke to doctors, VAD coordinators, patients and their caregivers about the experience of getting
a VAD.

IMPACT
Our goal was to generate a list of recommendations for the Mayo Clinic VAD Committee. As of 2023, Mayo Clinic has implanted 100 VADs (increased from 75 VADs in 2013).

Road to a VAD

The decision to implant a VAD is often made as a response to a crisis.

A person with chronic heart failure has a potentially fatal major event, and the decision has to be made quickly. We learned that in the 90-min “Decision Meeting” between patients and coordinators, there is a great deal of information that has to be absorbed at once.

Patients and their caregivers are often not prepared for the changes about to occur to both their lives, and the adjustments they will have to make.

To VAD, or not to VAD?

We spoke with 3 VAD coordinators about their experience working with VAD patients. We observed various major themes and insights about the VAD coordinator experience.

They act as the education, home health nurse and scheduler for patients.
They can receive an average of 30 phone calls a day.
They are on-call all night; many calls come between 5pm – 1am.
Patients remain unaware of appropriateness of phone calls, information- and time-wise.
Patients feel coordinators are the only person they can access, thus they call about everything and anything.
Primary physicians don’t know how to treat patients with VAD, and thus refer them to the coordinator.

Patient Perspectives

“I didn’t understand the adjustments I’d have to make for everyday activities.”

“I wanted to see someone with a VAD to make my decision.”

“I need a support group that is more about fellowship. Get together sharing ideas, it should be fun and interesting.”

“Every cardiologist knows about pace makers. Why don’t they know about VADs?”

“There is a strong need to advocate how important this is. You can live and do so much better with a VAD than with a bad heart.”

“VAD has given me a new life.”

“There is a difference between men’s and women’s bodies that needs to be taken into consideration…”

Caregiver Perspectives

Patients receiving a VAD require full time care for monitoring and assistance, both post operative and long term. In most cases this is a spouse who, therefore also experiences a major life change.

“While he was in surgery if someone would have come and let me wear the device for a little, it would have been so helpful.”

“It’d be helpful to have one point person that is “mine”, that I can

go to.”

“Preparing you for what’s coming, they really need to work on that. You have no idea what you’re getting into. There’s a ton of support after, but not a whole lot before.”

“Our jobs have changed a bit. John’s doing more of the cooking and I take care of the leaves in the gutter.”

“I needed to know what my time commitment was as a caregiver. The cost, the weight, adaptability. What activities can he do, what can I do?”

“They start wanting to teach the caregiver all these things and we’re not ready. We’re not in that moment. We’re just getting past surgery.”

“I was so scared and had no one to talk to. I saw the device the first day of surgery and didn’t know what to expect.”

These are the areas we outlined and presented as opportunities to increase and improve the success of VAD therapy:

ACCESSORIES

Need for active gear
Need for female attire
Need for shower gear

AWARENESS & ADVOCACY

In the general public
In the local community (Police, Fire Dept.)
With primary care physicians in rural areas

EDUCATION

Earlier introduction to VAD therapy for cardiac patients
Pre-surgery/post surgery education and support for caregivers
FAQ document for caregiver/patients to assist VAD coordinators

CAREGIVER CONVERSATION GUIDE
Designed to facilitate an honest discussion between family members about the changes, responsibilities and challenges of living with

a VAD

DECISION AID

A diagnostic tool to help primary care physicians who suspect that VAD therapy might be indicated for a high risk cardiac patient

FAQs
Resources available to reduce VAD Coordinator burden

Community Boards
Offering connection and engagement no matter where in the journey you are

LIVE CHAT WITH A VAD COORDINATOR
Answers to questions 24/7