Neuropsychology of HIV in children and adolescents
Despite advances in treating and preventing HIV infection, many children and youth continue to be affected by HIV and AIDS. The greatest numbers have been infected through transmission of HIV from mother to infant during pregnancy, birth or breastfeeding, or through sexual or drug use risk behaviors in adolescence (infection through blood products, although common early in the epidemic, has declined in most parts of the world). The discovery that giving antiretroviral medications during pregnancy and birth could reduce mother to child transmission of HIV in most cases has dramatically decreased this transmission route in resource-rich countries. Globally, however, pediatric HIV continues to be widespread, with an estimated 2.5 million children under age 15 living with HIV in 2009, and approximately 370,000 new pediatric infections occurring in that year alone (WHO, 2010). Adolescents, ages 15-24, represent more than 40 percent of new HIV infections each year, and in 2007 an estimated 10 million youth were living with HIV (Wilson, Wright, Safrit, & Rudy, 2010). Even in countries where mother-to-child transmission is now rare, young people born with HIV earlier who have survived through the development of effective treatments are now transitioning into adolescence and adult life. Thus, any potential effect of HIV on the development of cognitive and daily living skills continues to be an important issue.
The primary goal of research and clinical care early in the HIV epidemic was survival of the infants and children infected with the virus. Now that antiretroviral treatments (ART) have dramatically improved the life expectancies of children and adolescents with HIV, their quality of life, emotional well-being, day-to-day functioning and transition to successful adulthood take on even greater importance. Cognitive abilities (such as attention, memory, language, thinking speed, solving problems and making decisions) and behavioral and emotional issues (such as depression or attention deficit disorder) play an important role in quality of life. Neuropsychological evaluations measure cognitive functioning through the paper-and-pencil and sometimes computerized tests (Wolters & Brouwers, 2005), and usually also include questionnaires and interviews measuring issues such as depression, anxiety, hyperactivity and attention deficits.
These evaluations can be used to determine whether there are any impairments, their likely cause, and what recommendations might be helpful. Neuropsychological evaluations have also been used in research to help us understand the effects of HIV on the developing child and adolescent and to evaluate the effectiveness of new treatments.
Before ART, many children experienced early and devastating effects of HIV on the nervous system, with loss of developmental milestones or abilities and motor problems such as spasticity. Other children, especially those who were infected later in childhood or adolescence, had a slower progression of the disease with more subtle cognitive symptoms but could also develop severe central nervous system disease in the end stages of their illness. With the introduction of ART, this has become much less common for children (Chiriboga, Fleishman, Champion, Gaye-Robinson, & Abrams, 2005). There is still concern, however, that some children and adolescents with HIV may have subtle cognitive problems that will have a greater impact as they face more complex educational, social, and occupational tasks, particularly with transition to adulthood. Examples of specific areas of functioning that may be impacted by HIV in children include language, speed of thinking, memory and sustaining attention (Allison, Wolters, & Brouwers, 2009). Many children also have problems with anxiety and other psychiatric issues (Mellins, Brackis-Cott, Dolezal, & Abrams, 2006).
Through the generous participation of families and youth affected by HIV, researchers have been able to look more closely at the role of HIV in these problems. A key issue is disentangling the effects of HIV from other developmental risks many children face, including poverty and stress, educational disadvantage, family disruption and loss due to HIV, and family history of psychiatric or learning disorders. Symptoms related to HIV, such as fatigue, or side effects of medications can also affect cognitive functioning. Complicating issues with pregnancy and birth include premature birth, low birth weight, and prenatal exposure to drugs, alcohol, HIV and other infections, and medications such as ART. Studies that compare children and youth with HIV to others with these same risks are crucial. So far, such research has found that children who were prenatally infected and those exposed prenatally to HIV but uninfected perform about the same on tests of intellectual functioning, generally falling in the average to low average range, and the risk for behavioral disorders is not higher in the children with HIV (Malee et al., 2011). However, despite this encouraging news, some children with HIV who became ill with AIDS earlier in life appear to have lower cognitive performance despite later recovery of their immune system with ART (Martin et al., 2006; Smith et al., 2006; Wood, Shah, Steenhoff, & Rutstein, 2009). Current thinking is that treating children born with HIV early in life to prevent immune system decline, rather than starting treatment after a decline has occurred, might help prevent cognitive effects of HIV. Unfortunately, access to ART is still difficult in many developing countries, raising the risk for HIV-related cognitive problems for children living in those parts of the world.
Thus far, there have been few studies on the cognitive effects of HIV in adolescents who acquired HIV through risk behaviors, such as unprotected sex or needle sharing (Hosek & Zimet, 2010). Because the brain continues to develop into one’s early 20s, the effects of HIV on the brain in adolescents may be different from that in adults. Cognitive performance in adolescents can also be affected by other factors such as depression, anxiety, other psychiatric issues, learning disabilities in some youth, and many of the other risks mentioned above such as poverty and environmental stress. Another concern is the high level of substance use among many youth with HIV; we do not yet understand how HIV and recreational substances commonly used by adolescents, such as alcohol and marijuana, might interact to affect the brain. Thus, careful studies are needed to address the effects of HIV on adolescent cognitive development.
The cognitive and behavioral problems in children and youth with HIV have a number of implications for their daily functioning. Following are some examples of ways in which psychologists, social workers and other professionals can assist with lessening the impact of these problems on the lives of affected young people.
A neuropsychological evaluation can help detect problems with learning, attention, academic skills or other cognitive areas, as well as emotional issues such as depression or anxiety, and describe the child or adolescent’s strengths as well as weaknesses. For infants, developmental evaluations can identify lags in attainment of milestones and risk for further delays. The neuropsychologist may make recommendations for interventions such as speech/language or occupational therapy, special education services or counseling. If cognitive problems are related to psychiatric issues such as depression or attention deficit disorder, referrals for appropriate therapy and/or medication management can be made. In addition, new impairments suspected to be due to HIV can be followed up to determine whether treatment changes are indicated. Individuals with HIV or their caregivers may wish to discuss such an evaluation with their health care providers if they have noticed problems with school or daily functioning, emotional or behavioral issues, or cognitive changes such as memory problems or slowed thinking.
Many children and youth with HIV have significant obstacles to success in school including cognitive difficulties, losing school time due to illness, doctor visits or family disruption, and living in areas with disadvantaged school systems and high drop-out rates. Neuropsychologists and case managers can help identify the need for educational services and assist the youth or family in accessing them. They can also help youth obtain training in occupational and other life skills, an important aspect of making a successful transition to adulthood.
Medication adherence is a critical issue for children and youth with HIV (Nichols & Farley, 2009). Families typically start transitioning responsibility for medication adherence from caregiver to child before or during adolescence. Unfortunately, even adolescents without cognitive impairment may have difficulty taking medications properly because organizational and self-monitoring abilities are still developing, and because of emotional needs for independence or to not think about their HIV. This is worrisome since the medical advances that have turned HIV into a chronic condition depend on good medication adherence; without that, resistance to medications can develop, treatment options become limited, and youth are at risk for illness and death. In addition, the likelihood of transmitting HIV to another person is lower if viral load is kept low through good adherence, an important public health issue for adolescents and young adults who are more likely to engage in risk behaviors such as unsafe sex. Studies suggest that transitioning independence in medication adherence to adolescents should be gradual, with close monitoring, teaching of adherence aids, continued support from families and others in the environment, and communication about who is responsible for various aspects of adherence. Although the need for additional supervision for youth with clear cognitive impairments can be obvious, those with mild impairments may be at risk because their supervision needs are less easily appreciated. Neuropsychological testing can assist in identifying these youth and in providing recommendations for adherence interventions, generally as part of a multidisciplinary adherence team.
Information about a child’s developmental level can be used in planning how to disclose the child’s (or mother’s) HIV status in a manner he/she can understand.
Thirty years ago, it was difficult to imagine that one day children and youth with HIV would be making plans for employment, raising families and other tasks of adulthood. Preparation for this new and welcome phase of their lives involves learning necessary skills, coping with social and emotional aspects of HIV, and monitoring the effects of the virus. Psychologists, through research and clinical care, can play a role in helping shape the long-term outcomes for these youth.
I would like to acknowledge the valuable assistance of Veronica Figueroa, MA, in preparing this article, and the contribution of the many children and families whose research participation has helped us understand and treat the effects of HIV.
About the author
Sharon Nichols, PhD, is a project scientist in the Department of Neurosciences and assistant clinical professor, nonsalaried, in the Department of Psychiatry at the University of California, San Diego. She received her doctorate in clinical psychology from the University of Wisconsin-Madison in 1991, subsequently specializing in developmental neuropsychology. Dr. Nichols has over 20 years’ clinical and research experience in the field of HIV/AIDS, beginning with tracking cognitive and behavioral functioning in children with HIV enrolled in clinical trials of new medications. She currently serves in the Behavioral Leadership Group of the Adolescent Trials Network for HIV/AIDS Research, where she provides expertise in neurocognitive effects of HIV in adolescence. Her research focuses on cognitive effects of HIV/AIDS from infancy through adolescence, mechanisms and biomarkers related to effects of HIV on the central nervous system, and their interactions with development and with substance abuse and other risks. She is an investigator in the Pediatric HIV/AIDS Cohort study, where she is principal investigator of a study on the contribution of cognitive factors to medication adherence and other aspects of daily functioning in children and youth with HIV. In addition to her research on HIV, she studies the cognitive neuroscience of attention and working memory in traumatic brain injury and other developmental disorders.
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