Published on in CHOP News
September 23, 2011 — For young patients with HIV and AIDS to maintain effective, integrated healthcare support into adulthood, they need support systems that will help them successfully manage their own healthcare. HIV-positive youth often face additional challenges over and above what their peers living with other chronic diseases experience.
A study from researchers at The Children’s Hospital of Philadelphia’s PolicyLab, published online this week details the specific barriers for these young patients to transition smoothly to a long and productive adult life, and explores some promising strategies to aid the transition.
Defining healthcare transition
Healthcare transition is the purposeful, planned movement of children with special healthcare needs from child- to adult-centered healthcare. Although experts have long called for the development of transition programs to ensure continuous, coordinated, culturally-appropriate, compassionate, and family-centered care for patients aging out of the pediatric system, little is known about what strategies are most effective.
Challenges unique to adolescents living with HIV/AIDS
Young patients with HIV/AIDS are often faced with a complicated web of psychological, social, economic, and medical challenges that may create barriers to their ability to thrive in adulthood. For example, patients are often concerned about discrimination when they disclose their diagnosis to loved ones, and even to new healthcare providers as they move from pediatric to adult healthcare specialists.
Adolescents with HIV have higher rates of cognitive impairment and mental health problems like anxiety, depression, ADHD and PTSD.
In addition, taking medications consistently be very challenging for these patients for a variety of reasons. Among these are simply forgetting, fears of disclosing their disease status, an inconsistent daily routine, negative drug side-effects, and not taking medication when one is feeling well for a period of time.
Issues related to reproductive health, sexual orientation, and gender identity are often overlooked in pediatric and adolescent care. However, this is particularly important for patients with HIV/AIDS, since it can be a sexually transmitted disease. LGBT and transgender patients experience an additional layer of difficulty finding providers.
The study authors, Nadia Dowshen, MD, of The Children’s Hospital of Philadelphia’s PolicyLab, and Lawrence D’Angelo, MD, MPH, of National Children’s Medical Center, note that among the particular challenges about designing an effective transitional care program for youth with HIV/AIDS is the need to consider two distinct populations of patients: those who were infected at infancy by a mother carrying the virus, and those where were infected behaviorally — usually through sexual contact. These populations often face similar issues as children, but as they prepare to transition to adult care, they may have different clinical an psychosocial needs and concerns.
Pediatric vs. adult healthcare
In the pediatric care setting, young people with chronic diseases including HIV/AIDS are accustomed to a “one-stop-shopping” model of healthcare, where their mental, social, and medical needs are addressed simultaneously by an interdisciplinary care team. These sorts of coordinated services are rare when youth transition to adult care.
In this study, both HIV-positive youth and their pediatric care teams expressed concerns about the fact that adult care often offers fragmented medical, mental health, and social services, making it difficult for patients to access appropriate providers. In the worst-case scenario, this could mean that patients with mental health or substance abuse problems could be lose care entirely.
Sticking with medications upon aging out of the pediatric healthcare system was shown to be a problem for more than half of adult patients after they transitioned into adult care. Elaborate support systems are common among younger patients to help them stay on their medications, but they are not as widely available for adults.
Insurance issues are another significant barrier to all young patients with chronic disease, and particularly for those with HIV/AIDS. As they age into adulthood, access to providers can become even more complicated.
A common theme that arose across several studies about young HIV patients is the idea of the care team that saw them through their youth have come to be considered as “family” for many of the patients, and there may be difficulty on both the patient and provider sides to “let go” of this close-knit support system.
Finally, three-way communication among patients, and their new and old provider networks was a commonly cited challenge on both the patients’ and providers’ parts. Many youth living with HIV have become accustomed to well-coordinated care, and don’t expect, want, or feel prepared to bring new providers up to date on their medical history.
Very little research exists on evidence-based models for transitioning patients from pediatric- to adult-centered healthcare. However, a few programs, including one at CHOP, are showing promise in early evaluations. One clear conclusion was that successfully bringing HIV-infected youth into the adult care system requires early discussion of healthcare transition between patients and providers.
CHOP’s Adolescent Initiative reaches adolescents and young adults ages 12 through 24, in their own communities. A team of physicians, nurse practitioners, nurses, social workers, peers and mental-health professionals provide adolescent-focused case management in an integrated, multidisciplinary setting. The goal is to immediately link young patients to healthcare services and to help them become more knowledgeable, self-sufficient and competent in managing their HIV.
Early on in a patient’s care, the team begins preparing him for the transition to and adult setting. Well before the age of 24, social workers help to identify adult providers and programs, accompany patients on visits to multiple sites, and link them with a specific adult HIV case manager and community mental health provider.
The social workers assist with fostering communication among patients and their pediatric and adult providers, and can help prepare patients to navigate new insurance requirements with and manage their care among a group of multiple adult providers. After one year, there is a follow-up appointment with the client and the adolescent psychosocial team to assess the patient’s success during transition.
Preliminary results from follow-up interviews after at least 2 adult care appointments suggest that early education regarding healthcare access and site visits to multiple community agencies that offer HIV services may be helpful for youth during the transition process. The Adolescent Initiative is nationally recognized as a center for research and treatment, recently participating in two major national research initiatives for adolescents.
The study authors stress that continuing to track disease progression, medication adherence, patient satisfaction with transitional care, and factors that may predict a successful transition will help to ensure young patients lead productive adult lives for many decades beyond.
Dowshen N, D'Angelo L. Health Care Transition for Youth Living With HIV/AIDS. Pediatrics. Epub 2011 Sep 19.