Basic VAD program structure is something that has evolved over the past several years. As the technology changes and use increases, identifying the key members of a VAD team has become fairly straightforward. Institutional variations exist but each successful program has consistent key personnel. Several groups have described their recommendations for essential programmatic personnel (◘ Table 44.2).

Basic program organization requires that attention be applied to all aspects of patient contact, from identification to discharge from the program. Breaking down care of the patient into the individual points of contact and optimizing each point of contact can aid in maximizing outcomes of patient care [7].

In the last 10 years, we have seen significant improvements in the outcomes of children supported on VADs, and this in turn has led to a growing interest in improving quality of life in children on long-term VAD support. Learning from the expansive experience accumulated from the field of adult VAD support, dedicated pediatric VAD programs are becoming more common across North America and Europe. Most pediatric VAD programs are connected academically, administratively, and clinically to pediatric heart transplant programs, since the most common indication currently for pediatric VAD support is a bridge to transplantation. Key components of a successful pediatric VAD team have yet to be defined but in many setting consist of physicians, dedicated nurses or nurse practitioners, dieticians, social workers, and pharmacists. Each of these individuals plays an important role in the inpatient and outpatient setting where the primary goals are to prevent complications, ensure adequate growth and development, and allow for integration back into community life. Pediatric VAD programs mirror many adult programs except for some unique additional and vital personnel – namely, the role of child life specialist (CLS). Child life specialists, otherwise named “play therapists,” are specially trained individuals who help make inpatient and outpatient life for children with complex medical needs more bearable through child-centric activities. This may include music therapy, play therapy, video games, or any other activities that are identified by the child or adolescent to be important to their quality of life. Many of CLS providers have additional VAD training so that they can accompany the child and their family around the hospital or on outings out of the hospital before they are ready for discharge. For younger and smaller patients, VAD options are limited to paracorporeal devices such as the Berlin Heart EXOCR® that does not allow outpatient care. As such, with long wait list times for transplantation, children and their families are required to remain in the hospital for weeks, months, and possibly even years. The role of CLS, as well as other allied health team members such as physiotherapist, occupational therapist, neurodevelopmental specialists, and teachers, becomes of paramount importance to “normalize” inpatient stay as best possible and strive to improve quality of life for the patient and their family.

Access to a VAD program is key to success. Unless people know about your program, you won’t have patients to care for. There are two ways that a potential VAD candidate can access any VAD program through identification within the program’s institutional boundaries or through referral from an outside source (either medical or not). To maximize referrals from any source, some amount of outreach is necessary (i.e., face to face interactions, information seminars, educational offerings, advertising). ◘ Table 44.3 outlines key components of a successful medical provider outreach offering [8].

Optimization of program efficiency requires that each stage of patient contact and decision making have a standardized process or procedure with outlined roles for all team members. ◘ Table 44.4 outlines typical points of contact within a VAD program and issues to be considered. ◘ Table 44.5 suggests useful resources for VAD programs.

The overall goals for VAD therapy include patient survival and improved quality of life. For this population, improved quality of life encompasses, among other things, absence of pump-related complications, such as thrombotic complications or infection, and discharge from the implanting center with absence of re-hospitalizations. Since the introduction of implantable ventricular assist devices (VADs), routine discharge of patients has become feasible. For most patients this is a desired goal for both therapeutic and financial reasons. The increasing number of patients supported by VAD as well as the increasing length of wait time for a donor organ, hospitalization of a patient not requiring any special therapy cannot be justified. Discharge should be achieved despite any barriers, including geographic concerns, as long as the patient’s condition allows for safe discharge.

Home discharge with a VAD as well as long-term support while at home requires that a patient be in stable condition and be comfortable with the performance of their care, whether it is provided by the implanting institution or a local facility. In order to maintain this state, extensive patient and caregiver training, local community caregiver training, and regular outpatient department visits at the implanting center are required. It is not unusual for a VAD center to be following patients located in another geographic area, several hours, by car, boat, or airplane, away. Increasing numbers of outpatients on VAD support has necessitated that outpatient department clinics associated with VAD implant centers make adjustments in the way patients are followed. Subsequently, many implanting centers must rely on the resources located in the patient’s community and have increased the interval between routine outpatient visits.

With the introduction of implantable continuous-flow ventricular assist devices (VADs) into pediatric practice, discharge has now become a reality for children with end-stage heart failure. The number of children discharged is still relatively small compared to the adult VAD population, but there is a growing body of literature in this expanding patient population.

Complication prevention starts in the inpatient setting with comprehensive education of the families and patient, including how to recognize complications, how and when to contact the VAD team, and how to deal with emergency situations. Booklets or handouts describing potential complications as well as the number where the VAD team can be reached are important tools in the outpatient setting. While avoiding complications is an important goal, the reality is that many of these patients are likely to be readmitted to hospital. The INTERMACS has shown that in the adult population by 1-year post-VAD implant, at least 70% percentage of patients had experienced major complications, with even a higher percentage requiring readmission at this time point [9]. In the largest series of continuous-flow pumps in children from the PediMACS Registry (n =72), 53% were discharged with over half requiring readmission [10]. In a smaller multicenter experience, examining the outpatient experience of 12 patients with cardiomyopathy, readmission was not uncommon with an average of 2.5 readmissions per person [11].The most frequent cause of readmission was driveline infection, followed by subtherapeutic INRs and VAD alarms. In this patient cohort none of the patients required the use of emergency services. Lastly, it has been shown that it is possible to manage even smaller patients (<25 kg) in the in community with 45% of the patient cohort discharged after implantation [12]. Preparing for these readmissions is important and not only includes family education but also education and effective lines of communication with the community healthcare providers, transportation plans, and determining the appropriate place for readmission. While it is not possible to educate all people that come into contact with a child that has been discharged home, there are some groups that may benefit from education. This education can be patient specific or more general and targeted toward emergency response personnel, local emergency departments, primary care providers, and school administration. The type of education that occurs can be in the form of lectures, webinars, or simulation with the additional of written educational material. In some settings education is not possible given the number of first responders and the areas in which the family lives or travels; therefore, providing families with the necessary documentation to give to first responders and empowering the families to be an expert on the device is an alternative solution.