Improving the experience of receiving a Ventricular Assistive Device (VAD)
According to XXX data, over X million Americans have a Ventricular Assistive Device (VAD) implanted to prevent heart failure. We worked with the Mayo Clinic in XXX (location) 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 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:
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Pump
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Driveline
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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 (compared to 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.
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They act as the education, home health nurse and scheduler for patients
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One can receive an average of 30 phone calls a day
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On-call all night
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A lot occurs 5pm – 1am
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Patients remain unaware of appropriateness of phone calls, information- and time-wise
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Patients feel coordinators are the only person they have access so, thus they call about everything and anything
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Primary physicians don’t know how to treat patients with VAD, and always 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 difference between men’s and women’s bodies that needs to be taken into consideration…”
“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.”
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 also experiences a major life change.
“While he was in surgery if someone would have came 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.”
“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.”
“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?”
These are the areas we outlined and presented as opportunities to increase and improve the success of VAD therapy:
ACCESSORIES
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Need for active gear
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Need for female attire
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Need for shower gear
AWARENESS & ADVOCACY
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In the general public
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In the local community (Police, Fire Dept.)
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With primary care physicians in rural areas
EDUCATION
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Pre-surgery/post surgery education and support for caregivers
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FAQ document for caregiver/patients to assist VAD coordinators
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Earlier introduction to VAD therapy for cardiac patients
DECISION AID
A diagnostic tool to help primary care physicians who suspect that VAD therapy might be indicated for a high risk cardiac patient.
CAREGIVER CONVERSATION GUIDE
Designed to facilitate an honest discussion between family members about the changes, responsibilities and challenges of living with a VAD.
XYZ
ABC
XYZ
ABC
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