Andersons pediatric cardiology 1764

including a heart failure/transplant cardiologist experienced in caring for the heart failure patient, cardiothoracic surgeon, perfusionist, VAD specialist (i.e., registered nurse or nurse practitioner coordinator), social worker, case manager, physical and occupational therapists, mental health experts, registered dietician, and palliative care experts Identification of a specialist willing to be a consistent point of contact for VAD patients within the medical disciplines of hematology, infectious disease, and neurology may also be of benefit to ongoing management of VAD patients, given the risk of device-related complications and support of ongoing anticoagulation management Patients may also benefit from standardized practices that can be developed in collaboration with other disciplines (e.g., a standardized approach to suspected drive line site infection or suspected stroke).114 Additional services that may be useful in the management of the pediatric VAD patient but not routinely available at all centers include cardiac rehabilitation (exercise lab), child life, and art and music therapy services Although there is currently a paucity of literature to support outpatient management of the pediatric VAD patient, there is a growing body of evidence showing the feasibility of such endeavors, as well as the breadth of teams necessary to support this high acuity low volume population outside of the hospital setting.42,114–119 Currently, there is no regulatory oversight of pediatric VAD programs There are recommendations set forth by the International Society for Heart and Lung Transplant regarding VADs, which include recommendations on VAD management both in hospital and on an outpatient basis, although this document is generally geared for adult patients.14 As the field evolves, development of evidence-based guidelines to help guide the management of these complex outpatients will be needed Despite the increasing use of durable MCS in pediatrics, it remains a lowvolume therapy that may pose challenges to securing institutional resources, such as a dedicated VAD coordinator In the absence of dedicated funding, centers may choose to identify one or more key persons within the heart failure and/or transplant services (registered nurse, advanced practice nurse, perfusionist) to serve as a consistent point of contact for VAD patients A VAD coordinator plays a crucial role in successful outpatient management of the pediatric VAD patient; the scope of a VAD coordinator may vary at different institutions The coordinator may be responsible for being a liaison between the physician and family or be a clinician actively managing varying aspects of care including VAD settings, heart failure therapies, and the anticoagulation regimen In addition, many coordinates are responsible for the initial and ongoing education to hospital staff and caregivers (home, school, daycare), providing 24hour access for device troubleshooting and symptom management, supporting device implant in operating room, and acting as a connection between device representatives.115,119 Education for the patient and caregiver ideally begins prior to implant and continues so long as the device remains in situ Because pediatric VAD patients require adult supervision, identification of more than one caregiver can be considered A standardized approach to teaching and discharge of the pediatric VAD patient and caregivers is suggested and may be composed of the following: Age-appropriate patient education Caregiver education a Standardized device specific education plan with teach back ensuring a basic understanding of how the device functions, device care and controller functionality, and the ability to appropriately respond to alarms b Drive line exit site care (per institutional policy) with demonstration and signs and symptoms of infection c Daily monitoring of device, vital signs, weight, and medication record keeping as per institutional policy d Anticoagulation education as per institutional policy (type, administration guidelines, activity recommendations for patients on anticoagulation) e Cardiopulmonary resuscitation/automated external defibrillator training as per institutional policy f Expectations for routine follow-up, when and whom to call Home assessment (i.e., appropriateness of facilities based on individual patient needs, grounded outlets, assessing for static discharge) Identification of local resources (i.e., hospital, emergency medical services/fire station, primary care physician, outpatient lab, local gas, and/or electric companies) Preformatted letters may be provided to the primary care physician and local agencies to notify them of the presence of a VAD that in their area or returning to their practice Identification of local hospitals may be helpful as not all institutions (emergency departments) routinely see VAD patients, particularly pediatric VAD patients Disaster preparedness Creation of an emergency plan for VAD patients that can be implemented in the event there is a natural disaster or anticipated power loss (e.g., ice storm, hurricane) Once the patient (where applicable) and caregivers are assessed as competent in the care of the VAD supported child, an off-unit trip with an off-site trip can be pursued to ensure they remain both competent and comfortable caring for their child away from nursing supports An institution may consider mandating discharge to a local residence based on caregiver competence, patient stability, or distance of residence form discharging facility Dressing supplies and any prescribed medical equipment should be secured prior to discharge In addition, if the patient is to receive home nursing supports, device training for home nursing staff should be completed prior to patient receipt of such services/devices A system for patients and caregivers to contact their care team is suggested for the purpose of troubleshooting the device and early recognition of complications This may be completed through an existing call tree system or by providing 24-hour phone access Coverage may be provided by the physician provider, the VAD coordinator, or perfusion, as dictated institutionally and should be provided to the patient and caregiver upon discharge Plans for followup may vary from one institution to another but are generally as frequent as one to two times weekly with a gradual taper to once monthly or once every 3 months Patients require frequent lab monitoring and device downloads and home record review with visits Imaging may become less frequent as the patient continues to demonstrate stability; however, the usefulness of more frequent echocardiographic imaging should be at the discretion of the care team and should always be completed when there are clinical concerns Device and driveline exit site assessment should occur with each visit Given the occlusive nature of some dressings, it may be reasonable to complete a dressing change during a routine clinic visit Caregivers may be able to obtain photographs to share with the care team, provided this does not compromise their ability to complete dressing changes per protocol.115,120 Anticoagulation monitoring can be provided by the managing cardiac team or by a consulting specialty service such as hematology There are currently no pediatric VAD specific anticoagulation guidelines for intracorporeal CF devices Manufacturer recommendations, as well as data extrapolated from the adult experience, are useful resources, as well as hematology services, in devising the ... continues so long as the device remains in situ Because pediatric VAD patients require adult supervision, identification of more than one caregiver can be considered A standardized approach to teaching and discharge of the pediatric VAD patient and caregivers is suggested and may be composed of the following:... local hospitals may be helpful as not all institutions (emergency departments) routinely see VAD patients, particularly pediatric VAD patients Disaster preparedness Creation of an emergency plan for VAD patients that can be implemented in the event there is a natural disaster or... Anticoagulation monitoring can be provided by the managing cardiac team or by a consulting specialty service such as hematology There are currently no pediatric VAD specific anticoagulation guidelines for intracorporeal CF devices Manufacturer recommendations, as well as data extrapolated from the adult