Due to medical advancements, children with congenital and chronic heart disease are experiencing increased life expectancy. While this translates to greater potential for meaningful, productive lives, it also means there is an increased need for transitioning patients into adult-centered care.
But the process of moving patients from a pediatric to an adult system comes with challenges. Many patients experience a lack of structured transition preparation and delayed or inappropriate care, leading to undue emotional and financial distress on patients, their families and healthcare systems. This is why Children's of Alabama developed a patient-centered transition program specifically for pediatric heart transplant patients.
Using GotTransition.org as a primary resources, Children's of Alabama tailored its program to the needs of young adults using the six core elements of healthcare transition. Transition of care typically takes place at 19 years old, with the exception of patients who recently underwent transplant surgery, have an acute condition, or are experiencing a major life change, and transition preparation begins between the ages of 12 and 14.
Through the development of this program, Children's of Alabama learned to prioritize four goals for patient care.
- Provide uninterrupted care. Patient-centered care is not one-size-fits-all and, when treating young adults, should be developmentally appropriate. Children's of Alabama's transition clinics are multidisciplinary, meaning patients should receive comprehensive treatment specific to their needs. The hospital also developed a transition program registry to identify and track patients.
- Include age-appropriate education. Children's of Alabama's goal is to provide education to patients and their families in a way they can understand. One way this is achieved is through a transition binder. Each binder includes information specific to a patient's care plan, such as medical history, appointment reminders, medication instructions and caregiver resources. The goal is, over time, patients are able to comfortably and confidently provide self-care and communicate with their medical providers.
- Promote skills. Each patient utilizes a transition checklist encouraging self-care. The checklist is divided into stages, and each stage includes a set of skills patients should be able to complete at their developmental level. These may include knowing their prescriptions, being able to contact their pharmacist, discussing medical issues with their providers, etc. Once patients reach stage 5, the hope is they are ready for transition to adult care.
- Foster independence. The program includes various care methods for fostering independence. Starting at age 14, patients attend appointments with their medical providers alone, with their caregivers joining at the end to go over the plan of care. Patients also begin co-signing their medical consent forms with their caregivers at the age of 14. It is often difficult for parents to let go of their care role, but it is important for patients to become their own advocates. Transition readiness assessments are used to determine what areas patients need to work on before transitioning to adult care.
A Battelle Healthcare Colloquium member hospital, Children's of Alabama continuously strives to improve heart failure patient outcomes. Ongoing transition program goals include improved evaluation of transition checklists, implementing post-transition follow up assessment, expanding transition program to include all pediatric cardiology patients and incorporating inpatient care.
Are you a Colloquium member? Watch the CardioConnect webinar on this topic on the Member Portal.