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Integrating transition from pediatric- to adult-centered care: The APP’s role
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Levon — an 18-year-old with sickle cell disease — enters the clinic room with his mom, who nervously allows him to proceed alone.
“Welcome to Transition Clinic,” the advanced practice registered nurse (APRN) says. “Your mom will be meeting with the social worker nearby. So, why do you think you are here today?”
Perplexed, Levon briefly stares at the APRN and replies: “I’m not sure. My mom usually takes care of my medical stuff, but I guess that’s why I’m here. I need to learn to take care of myself, right?”
The APRN tells him that he’s on the right track, and that the purpose of his visit is to begin the process of teaching him how to take care of his own medical health, understand his disease and how it affects his health, and how to advocate for himself.
“We want to empower you to take care of yourself,” the APRN says. “We will help connect you with adult providers and other people to help you manage your health as an adult. And don’t worry — we will help your mom with this process, too. After all, transition is a big change for the entire family.”
With this introduction, the education for transitioning from pediatric- to adult-centered care begins.
Health care ‘crisis’ for AYAs
The transition from adolescence to young adulthood for healthy people can be filled with challenges and feelings of anxiety and apprehension as they learn to take on the responsibilities that are expected of them as adults.
This same transition for adolescents and young adults (AYAs) with chronic illnesses is magnified, compounded by feelings of distrust of the adult health care system, apprehension, apathy, anxiety, negative perceptions, powerlessness and fear of the unknown.
Blum and colleagues defined transition in health care as the “purposeful, planned movement of AYAs with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”
Medical advances have transformed health care for children with chronic medical conditions. Many of those who once died in childhood are now living into adulthood. However, these emerging young adults with chronic conditions often face many challenges as they transition into the adult health care system.
Trust is a significant part of the health care relationship that builds and develops over years of medical and psychosocial care. The pediatric model of family-centered care encourages and supports a trusting and nurturing relationship among pediatric caregivers, patients and their families.
There is a health care crisis among AYAs, in part, due to a lack of planned and purposeful transition.
Historically, transition was based on a medical model that focused on treatment and adherence only. APRNs are in the perfect position to educate, case manage, guide, coordinate and counsel AYAs in the process of transition by offering expertise in a supportive and trusting environment. Trust in the transition process is crucial to a successful transfer of care.
A multidisciplinary hematology team at Children’s Hospital Los Angeles developed PASSAGES, a program designed to empower young patients with chronic hemoglobinopathy conditions with transition skills and health care knowledge before they graduate to adult care. Fundamental aspects of PASSAGES include preparation, self-advocacy, support, life skills, accountability, growth, empowerment and success.
Patients with hemoglobinopathies who require ongoing adult medical care for their medical condition experience a lack of adult provider knowledge; poor understanding of preventive health maintenance and how to monitor for organ dysfunction; and the need for specific medications such as chelators and hydroxyurea, multiple subspecialists, infusion centers for chronic transfusions and pain management. Adults with sickle cell disease face additional challenges of perceived racial bias and discrimination when accessing the adult medical setting.
The most critical time for AYA patients is during the transfer of care from pediatric to adult care. This can be a time of increased morbidity and mortality without the proper education and trust needed to make this change successful.
Starting early and integrating patient-specific identified skills into medical appointments helps establish trust in the process as they bridge over to their next phase of health care. The PASSAGES program uses an APRN nurse navigator who connects the pediatric medical home to the adult health care system ensuring there are no gaps in medical care for the AYA.
Pretransition
The pretransition curriculum targets patients aged 12 to 17 years during their routine medical appointments.
Children with chronic conditions learn central medical care concepts when they become part of the learning process. Parents are an integral part of the day-to-day management of their child’s condition and, thus, transition preparation for the parents is imperative as they learn to relinquish control.
Transition readiness behaviors measured during clinic visits include:
- naming and explaining diagnosis;
- knowing reasons for clinic visit;
- meeting with provider alone;
- knowing baseline hemoglobin;
- medication proficiency: naming, explaining and knowing medication(s) and doses;
- verbalizing pharmacy name;
- reading prescription medication bottle; and
- contacting pharmacy for medication refills.
Transition clinic
The transition clinic focuses on patients aged 18 to 21 years.
The APRN identifies learning deficits regarding health care behaviors and knowledge, and tailors an educational program to address individual needs.
The APRN works in close collaboration with the multidisciplinary team to support the entire family through this process as the shift from parent-directed care changes to patient-directed care.
AYAs are required to come to the exam room and meet with the provider alone, while their parents are in a separate room with the social worker. This appointment will encompass concepts of transition, learning self-advocacy, medical knowledge — including the genetics of the patient’s disease for future reproductive planning — medication knowledge, insurance issues and differences between pediatric-centered care and adult-centered care.
This process continues over 3 years, resulting in knowledge acquisition for both the patient and the parents and ensuring a successful transition by age 21 years.
‘Name it, explain it, know it’
The APRN plays a vital role in successful transition from pediatric- to adult-centered care.
Levon, the hypothetical patient described in the opening vignette, illustrates the need to start the process early.
Support from the multidisciplinary team for both the patient and parent can reduce the anxiety and fear surrounding transition. Embedded pretransition discussions starting at age 12 years help develop essential medical knowledge and skills and trust in the transition process.
The PASSAGES transition program embodies our slogan — “Name it, explain it, know it” — as APRNs strive to help their patients successfully transition to adult care.
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For more information:
Susan M. Carson, MSN, RN, CPNP-PC, is nurse practitioner III in the hematology program running the thalassemia and chronic transfusion program of Children’s Hospital Los Angeles. She also is an assistant clinical professor at UCLA School of Nursing and a member of Association of Pediatric Hematology/Oncology Nurses (APHON).
Deborah G. Harris RN, MN, CPNP, is nurse practitioner III in the hematology program of Children’s Hospital Los Angeles and an APHON member.
Anne Nord, MSN, FNP-C, is nurse practitioner in the hematology program and nurse navigator in the PASSAGES program at Children’s Hospital Los Angeles and an APHON member. She can be reached at anord@chla.usc.edu.
Trish Peterson, MSN, RN, CPNP-PC, is nurse practitioner III in the hematology/oncology program of Children’s Hospital Los Angeles.
Disclosures: Carson, Harris, Nord and Peterson report no relevant financial disclosures.
HemOnc Today collaborated with Association of Pediatric Hematology/Oncology Nurses on the submission of this column. To contribute to this column, contact Alexandra Todak at stodak@healio.com.