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Author: Kent Seckinger, CCDS

ICD Support Group, Patient Education

ICD Support Groups: A Safe Space to Discuss the Lifestyle Adjustments of a Cardiac Device

“As a healthcare worker I realize that I seriously underestimate the impact on patients receiving an implantable cardioverter-defibrillator (ICD). Besides the patients I have the pleasure of caring for, I do not know anyone personally living with an ICD. Perhaps you do, but I am willing to bet a good majority of clinicians and device specialists do not know firsthand on what life is truly like for ICD patients.”

by Melissa Campbell, CDRMS, PrepMD Remote Monitoring Specialist

According to the JAMA, more than half a million people within the United States have an ICD.1 As common as that may be, I question how healthcare professionals can better understand and serve the needs of ICD patients.

Of course, cardiac device clinics must do their best to provide patient education. Clinics are responsible for patient communication within the brief window of clinic visits and device checks, but that is usually at prompted questions initiated by the patient.  How many patients leave their appointments needing more understanding about their newly diagnosed heart condition and their implanted cardiac device? 

Recent studies suggest that offering an effective ICD support group can provide patients with a safe space to discuss the emotional impact and lifestyle adjustments from having an ICD. 

Benefits of ICD Support Groups:

  • Improved quality of life
  • Enhanced communication with healthcare providers
  • Greater understanding of heart disease and cardiac devices 
  • Education on device follow up via remote monitoring 

The value of organizing an ICD support group will not only meet the initiatives listed above but can offer practical pathways for clinics and hospitals to increase engagement and overall patient satisfaction. It is an opportunity to for learning through dialogue while serving a vulnerable patient population.

If your clinic or organization is considering a support group for cardiac device patients, here is a short list of things to bear in mind:

  • Interest
  • Subject matter
  • Access
  • Promotion

To initially get the ICD support group started there must be some level interest. The literature suggests that patients were more likely to participate in a support group within the first couple of years of ICD implant. A patient survey conducted within device clinics can offer data on general interest of a support group and topics that patients want to discuss. 

Another thing to consider is patient access to the support group. Based on the size of the clinic or if the clinic has multiple sites, perhaps a hybrid of in-person and virtual options would permit high participation. The ICD support group is to offer support and not be an added burden. There are many creative options available for clinics to connect with patients.

Lastly, advertise that a support group is available! By enlisting the assistance of discharge nurses, front desk workers or any other healthcare personnel that encounter ICD patients can help promote the support group.

Blog article brought to by the expert staff on the PrepMD Clinic Solutions Leadership Team who provide remote monitoring solutions, including software and service, to cardiac device clinics, enabling excellent care for their CIED remote monitoring patients.

Doctor at laptop on phone

Monday Morning in the Clinic – Would some of your device clinic patients benefit from a support group?

It is Monday morning; the clinic is already buzzing with staff and patients checking in for early appointments. Upon checking the voicemails from the weekend, you hear a distressing message from an established cardiac device patient who states she has received multiple shocks from her ICD. Sadly, this is not the first time you have retrieved this message from this patient.

Although you hope the patient went to the ER, based on her medical history you already know there is not much you or the electrophysiologist can do. That type of response will not give this patient comfort. You are aware that she is not the only patient who has questions and some anxiety about having an implanted cardiac device. How can the clinic assist these patients?

Why should your clinic or organization consider a support group for cardiac device patients?

  • Improved quality of life
  • Enhanced communication with healthcare providers
  • Greater understanding of heart disease and cardiac devices
  • Education on remote monitoring follow up

For additional information on this topic, visit

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-021-06735-3