Unique challenges can affect the success of the shift from pediatric to adult care settings.
Perinatally acquired HIV or HIV acquired early in childhood (collectively known as early acquired HIV [EAHIV]) was cast into the HIV epidemic from its inception. In the United States, 1650 cases of perinatal HIV were diagnosed in 1991 at the height of the US epidemic.1 Universal screening of pregnant persons and antiretroviral therapy (ART) resulted in a 95% reduction in new perinatal infections as of 2019.2 Improvements in ART potency, opportunistic infection prophylaxis, and other public health measures have not only decreased the rate of new infections but also decreased childhood mortality associated with EAHIV. As a result, children who would have died before adolescence are now reaching early adulthood and beyond. These adolescents and young adults (AYA), like others with chronic pediatric medical conditions, will need to transition care from pediatric to adult providers. Health care transition is defined by the Society of Adolescent Health and Medicine as a “purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult-oriented health care systems.”3 Health care transition for AYA with EAHIV is a heterogeneous process with variable outcomes that may affect treatment adherence and follow-up.4 Adolescence is a distinct developmental period defined by physical, psychological, intellectual, and social changes. AYA with EAHIV must navigate health care transition in the context of these developmental changes as well as a unique set of challenges outlined below.
HIV infection is a well-established risk factor for the development of neurocognitive disease. Although this risk appears to have been mitigated to some extent by ART, those with EAHIV may have higher rates of cognitive impairment with deficits in areas such as executive functioning, memory, and visuospatial and language abilities. This pathology is multifactorial, resulting from neurotoxicity associated with older generations of ART, severity of HIV disease, immune suppression, and duration of time with uncontrolled viremia.5 Studies have found lower cognitive functioning in those with EAHIV who progressed to AIDS, particularly in cases of early HIV encephalopathy.5 Early diagnosis and treatment of HIV appear to abrogate these risks. Studies have determined that early initiation of ART results in better neurodevelopmental outcomes.6 As children with EAHIV become adults, they may mature and develop at different rates because of this neurocognitive disease. Health care transition is often guided by chronological age, yet chronological age may be an ineffective marker of developmental readiness for patients with neurocognitive disease.7 In a cohort study evaluating the transition experience of 59 AYA with EAHIV, 12.1% felt that their provider failed to take their level of development into consideration when attempting to transition care.7
ADVERSE CHILDHOOD EXPERIENCE
Adverse childhood experience (ACE) is a broad term used to describe traumatic events in a child’s life that cause toxic stress. The cumulative effect of ACEs can negatively affect many aspects of an adolescent’s life, including physical and mental health.8 A systematic review and meta-analysis from the United Kingdom found that individuals who had at least 4 ACEs growing up were 4 times more likely to experience mental health disease.9 Growing up with a chronic medical condition, many AYA with EAHIV have struggled with frequent illness and hospitalization, particularly prior to the use of combination ART. In the United States, many have lived in areas with extreme poverty and limited resources and come from communities of color that have experienced historical discrimination and institutional racism.10 These AYA are also more likely to have experienced loss at a young age. In a cohort of 59 AYA with EAHIV in the United States, 32% had a deceased father and 59% had a deceased mother.7 This represents a significant loss and forces some AYA to become the caretaker for other family members and younger siblings.
COMORBID MENTAL HEALTH DISEASE
AYA with EAHIV have a higher prevalence of mental health disease compared with the general population.11 Comorbid mental health disorders seen in this group include anxiety, depression, attention-deficit/hyperactivity disorder, and posttraumatic stress disorder. These disorders may be driven in part by childhood trauma such as parental loss, chronic illness and hospitalization, poverty, and exposure to violence.11 As children become young adults, factors such as bullying, body dissatisfaction, alcohol use, and school struggles may also contribute.12 The prevalence of mental health disorders in this population underscores the importance of an interdisciplinary approach, both in the pediatric and adult settings, when preparing for health care transition. Failing to address mental health disease can affect health care transition and result in poor treatment adherence. A study of adolescents in Tanzania found that elevated scores on the Strengths and Difficulties Questionnaire, a measure of emotional and behavioral difficulties, were associated with increased incomplete adherence to ART.13 Another study found that adding a psychologist to the HIV care team increased rates of ART adherence, which spanned the transition process.14
Children with EAHIV spend most of their childhood depending on their caregiver and pediatric care team to manage their disease. This team also collaborates on when to disclose the diagnosis of HIV to the child. Disclosure should be done prior to preparing for and enacting a health care transition plan. For the transition to be successful, AYA need to know of their disease, have a solid understanding of the fundamentals of HIV, and feel comfortable navigating their health care options to make informed decisions. Delaying disclosure may impede the development of these skills, leading to learned helplessness. Disclosure may be delayed for reasons including a desire to prevent psychological distress, guilt, fear of discrimination, and general discomfort with having the conversation.15 Disclosure is often thought of as a discrete event; however, it is most successful if approached in developmentally appropriate increments, which requires time and effort from the caregiver and health care team.16 HIV disclosure is only the first step in a patient-caregiver-provider collaborative process of establishing full independence in patient medical decision-making.
Despite efforts to improve the general population’s education and awareness, HIV remains a highly stigmatized disease. As such, fear may influence the support structure of important relationships in the lives of AYA with EAHIV. Stigma may affect how and when HIV is disclosed by the caregiver to AYA15 as well as how and when AYA disclose their HIV status to their partner(s).17 Adolescence is a developmental time in which attachment to peer groups becomes paramount. HIV-related stigma may affect AYA’s relationships with peers as they strive to fit into group norms and be accepted. This fear of stigmatization may affect their quality of life and ability to transition to adult care settings.7,18 A number of qualitative outcome studies have identified HIV stigma as a factor that negatively influences health care retention and ART adherence.7,18 Adolescents specifically cite fear of having their HIV diagnosis disclosed during the transition to adult care as a barrier to transition.19
PEDIATRIC VS ADULT HEALTH CARE SETTINGS
Patients are more likely to engage with and stay in a health care setting where they feel safe, valued, and respected, and can trust their care team. AYA with EAHIV may experience a spectrum of care settings across their transition, some of which may deter them from long-term engagement in care. A successful health care transition requires strong investment from both pediatric and adult provider teams. Unfortunately, there may be hesitancy on the part of the pediatric care team to transition patients with EAHIV as they have often cared for the patients since infancy or early childhood.4 In addition, there are intrinsic differences in the care philosophy and infrastructure of pediatric and adult settings. Adult HIV clinics are perceived as more businesslike, with fewer youth-friendly services.7,18 In the adult setting, AYA are expected to take ownership over navigation of their health care, whereas the pediatric setting embraces an approach that values the caregiver’s role as well as the developmental stage of the patient.7,18 Adult providers may also be perceived as not having the skills to adequately address the many psychosocial and developmental issues faced by AYA.7,18 Finally, the degree to which pediatric and adult clinics communicate and coordinate the health care transition process appears to be essential to success.4
An emerging theme in the health care transition literature is the value of blending care philosophies between these clinic settings. There are many examples of such coupling, from incorporating an adult provider in a pediatric clinic setting (or vice versa) to incorporating youth-friendly services and structures (YFSS) in the adult clinic setting. Important aspects of YFSS include physicians trained in AYA development and care philosophy; accessible care (ie, flexible hours, walk-in services, forgiving late policies, technology for reminders and communication); and on-site, interdisciplinary services (ie, social work, case management, mental health providers).20 Adopting such practices has been shown to facilitate successful transition to the adult care setting. A cross-sectional study involving 680 AYA with HIV aged 15 to 24 years found that AYA were more likely to be retained in care in clinic settings with evening hours and youth-friendly waiting areas, and where the providers had training in adolescent medicine.20
AYA with EAHIV must navigate childhood and adolescence facing numerous obstacles due to living with a stigmatized chronic medical condition and challenges related to their social determinants of health. Health care transition is an essential step in securing these patients’ long-term health but must be carefully and individually curated. Provider care teams should collaborate to create a pathway to transition that accounts for the complexity of adolescent physical and psychosocial development, overlaid on the unique clinical, neurological, and psychosocial background of aging to adulthood with EAHIV. Additional studies are needed to evaluate and optimize the pathways utilized in health care transition to ensure that this population’s unique needs are met.
Centers for Disease Control and Prevention. Achievements in public health: reduction in perinatal transmission of HIV infection—United States, 1985-2005. MMWR Morb Mortal Wkly Rep. 2006;55(21):592-597.