August 2019: Meetings, Data, & Survey Results

Fall Meeting:

As summer comes to an end, we are getting ready for our Fall meetings! In September, we will be strategizing about our quality improvement efforts, working on patient reported outcomes, education materials, and other innovative projects with our diverse leadership team. Our leadership continues to grow to over 45 leaders in ACTION! The November learning session is open to all members of ACTION, including patients & families.

ACTION Data Updates:

We now have over 170 patients entered into the ACTION registry! We also launched REDCap 2.0 for our quality improvement data collection. Progress continues to build for our Fontan-VAD Physiology Project.

Cardiac Rehabilitation with VAD:

Baseline Survey Results: We heard from our network and appreciate your valuable input about the current attitudes & practices regarding cardiac rehabilitation for patients with a durable continuous VAD. A multidisciplinary cohort of 52 respondents from 28 ACTION centers completed the survey.

What we learned:

  • Exercise Testing: Although 52% of respondents report performing exercise testing of VAD patients, most (89%) were six-minute walk tests instead of formal exercise stress testing (32% stationary bike and 16% treadmill).
  • Cardiac Rehabilitation: While all centers refer to physical therapy while inpatient, only half (53%) refer to cardiac rehabilitation. If cardiac rehab is performed, it is usually done at the ACTION center (84%), a local specialized center (21%), or a mix of the two (5%). Five respondents (26%) reported utilizing a home-based cardiac rehab program.
  • Barriers: Most commonly reported barriers to either cardiac rehabilitation or exercise testing are:
    • Inadequate resources or staff
    • Inadequate knowledge on how to perform or implement cardiac rehab
    • Concerns about safety
    • Inability of patients to travel to rehab facility
    • Concern about utility of exercise testing or cardiac rehab

Despite these perceived barriers, over 90% of centers are interested in implementing a standardized cardiac rehabilitation program for pediatric VAD recipients. Thus, our next stage will be rolling out a standardized cardiac rehabilitation protocol for all interested ACTION centers.

Questions: Contact or