AIDS

AIDS

C H A P T E R 12 HIV/AIDS Sylvie Naar1, Karen MacDonell2, Salome Nicole Cockern3 1 Florida State University, Center for Translational Behavioral Sci...

216KB Sizes 1 Downloads 165 Views

C H A P T E R

12 HIV/AIDS Sylvie Naar1, Karen MacDonell2, Salome Nicole Cockern3 1

Florida State University, Center for Translational Behavioral Science, Tallahassee, FL, United States; 2 Wayne State University, Department of Family Medicine and Public Health Sciences, Detroit, MI, United States; 3 Wayne State University, Department of Pediatrics, Detroit, MI, United States

Overview of HIV Diagnosis and prevalence of HIV Human immunodeficiency virus (HIV) attacks and destroys infectionfighting CD4 cells (T cells) of the immune system. Without treatment, HIV can gradually destroy the immune system and can advance to acquired immunodeficiency syndrome (AIDS). HIV reduces the number of CD4 cells in the body, making the person more likely to get other infections. HIV is transmitted through contact with bodily fluids from another person with HIV, including blood, semen, preseminal fluid, vaginal fluids, rectal fluids, and breast milk. In the United States, the primary mode of transmission is through male to male sexual contact followed by heterosexual contact. Motherechild transmission rates are extremely low in the United States and decreasing globally (Vrazo, Sullivan, & Ryan Phelps, 2018). Thus, this chapter will focus on HIV-related self-management in perinatally and behaviorally infected adolescents and emerging adults. Four million young people aged 15e24 years are living with HIV worldwide, and an estimated 1500 young people around the world acquire HIV every day (UNAIDS, 2014, 2015). The highest prevalence rates are in Africa and the Caribbean (CDC 2016). Although the overall HIV incidence from 2003 to 2014 in the United States decreased by 25%, among youth aged 13e24 years, it increased by 43% (Frieden, Foti, & Mermin, 2015). Moreover, new infections among youth are overly

Adherence and Self-Management in Pediatric Populations https://doi.org/10.1016/B978-0-12-816000-8.00012-8

287

© 2020 Elsevier Inc. All rights reserved.

288

12. HIV/AIDS

represented in minority groups; almost 75% of new infections were among men who have sex with men, and more than 50% of new infections were among African American youth (Centers for Disease Control and Prevention, 2012).

Antiretroviral treatment Antiretroviral treatment is recommended for all HIV-infected individuals, regardless of CD4 T lymphocyte cell count, to reduce the morbidity and mortality associated with HIV infection and to prevent HIV transmission. HIV drug resistance testing is recommended at entry into care to guide selection of the initial antiretroviral treatment. A drug regimen for a treatment-naive patient generally consists of two nucleoside reverse transcriptase inhibitors in combination with a third active drug from one of three drug classes: an integrase strand transfer inhibitor, a nonnucleoside reverse transcriptase inhibitor, or a protease inhibitor with a pharmacokinetic enhancer (booster). See the case at the end of the chapter for an example treatment regimen. Although long-acting injectable medications are on the horizon, they are currently unavailable.

HIV self-management Significant progress has been made in the last 30 years in the prevention and treatment of HIV/AIDS. Combination antiretroviral treatment has transformed HIV from a rapidly debilitating, fatal disease into a manageable chronic disease with high potential for a healthy life for multiple decades (El-Sadr et al., 2012; Kanters, Mills, Thorlund, Bucher, & Ioannidis, 2014). A paradigm-shifting study (Cohen, McCauley, & Gamble, 2012) changed guidelines to prescribing antiretroviral treatment immediately for all risk-taking groups, including adolescents and young adults with HIV, regardless of immune system status. Proper adherence to antiretroviral treatment is necessary for viral suppression, when the amount of virus in the blood (“viral load”) is undetectable by laboratory tests (Kobin & Sheth, 2011). Lower viral load is associated with improved health outcomes (Benator et al., 2015) and decreased risk of transmission to sexual partners even during risky sexual behavior (Cohen et al., 2016; Gray et al., 2000). Viral suppression is associated with lower transmission rates within a community, leading to decreased community viral load (the aggregation of individual viral loads within a community) (Das et al., 2010). Viral suppression in the period immediately following diagnosis is associated with lower subsequent morbidity (Bangsberg, 2010). With accurate and rapid HIV testing, preexposure prophylaxis (PrEP) for highrisk individuals, and simplified, efficacious antiretroviral treatment regimens, we could see an end to the global AIDS epidemic (Fauci & Folkers, 2012; Joint United Nations Programme on HIV/AIDS (UNAIDS, 2014). Despite growing optimism, the epidemic remains a major and increasing

Theories and predictors of treatment adherence

289

cause of morbidity among youth and ethnic/racial minorities, particularly in North America. It is estimated that only 6% of youth living with HIV are virally suppressed in the United States (Zanoni & Mayer, 2014). For antiretroviral treatment to be effective, youth with HIV must develop self-management behaviors at each and every stage of the HIV treatment cascade, which includes linkage and timely initiation of care, retention in care, and persistent adherence to antiretroviral treatment. Similarly, youth at high risk for HIV infection must develop selfmanagement behaviors to be fully engaged in the HIV prevention cascade: routine HIV and sexually transmitted infection testing and PrEP access, uptake, and adherence when warranted (Gardner, McLees, Steiner, del Rio, & Burman, 2011; The White House Office of National AIDS Policy, 2010; 2015).

Theories and predictors of treatment adherence and HIV self-management In the past, reasons for missing medications included complexity of regimens and side effects, but newer formulations of antiretroviral treatment achieve viral suppression with adherence levels as low as 80%, with fewer side effects (Kobin & Sheth, 2011; Viswanathan et al., 2015). Thus, the focus has shifted to psychosocial predictors of adherence. Early studies of adherence in youth found that frequent substance use, life stressors (Murphy et al., 2005), psychological symptoms (Hosek, Harper, & Domanico, 2005; Naar-King, Templin, et al., 2006; Williams et al., 2006), low self-efficacy (Naar-King, Wright, Parsons, Frey, Templin, Lam, et al., 2006), and perceptions of the negative effects of medications (Belzer, Fuchs, Luftman, & Tucker, 1999) were linked to poor adherence, but most studies used small samples with no theoretical model.

The Transtheoretical Model One of the first studies of adherence predictors in youth with HIV (MacDonell, Naar-King, Murphy, Parsons, & Harper, 2010) used the Transtheoretical Model (Prochaska, Redding, Harlow, Rossi, & Velicer, 1994), which posits that motivational readiness to change behavior precedes actual behavior change. Social cognitive factors from the Transtheoretical Model may also be applicable to understanding adherence, including self-efficacy (i.e., confidence and avoiding temptation) and decisional balance (i.e., weighing the pros and cons of behavior change). Higher motivational readiness predicted optimal adherence, and higher social support and self-efficacy predicted readiness (MacDonell et al., 2010). Decisional balance was associated with self-efficacy. Mental health symptoms were not associated with adherence, likely because more than

290

12. HIV/AIDS

half the sample scored above standardized clinical cut-points for the Brief Symptom Inventory. The model was later confirmed with larger diverse samples of youth with HIV; higher levels of substance use and mental health symptoms were associated directly or indirectly with suboptimal adherence (Dinaj-Koci, Wang, Naar-King, & MacDonell, 2019; MacDonell, Jacques-Tiura, Naar, Isabella Fernandez, & ATN 086/106 Protocol Team, 2016). The Transtheoretical Model has been used to predict sexual risk and substance use in youth with HIV (MacDonell et al., 2016; Naar-King, Wright, Parsons, Frey, Templin, & Ondersma, 2006; Outlaw, Naar-King, Janisse, & Parsons, 2010). In the only study of predictors of retention in care in rural Kenyan youth, the presence of another HIV-infected household member was related to improved retention in care, suggesting that social support of family members may be key (Brown et al., 2017).

Socialeecological model The socialeecological model is a comprehensive model used to understand adherence in pediatric chronic conditions (McGrady, Ryan, Brown, & Cushing, 2015) and has shown some success in predicting adherence in youth who were perinatally infected with HIV (Naar-King, Arfken, et al., 2006). Socialeecological theory suggests that suboptimal regimen adherence is driven by risk factors across systems, including individual child factors, family, and extrafamilial factors (Bronfenbrenner, 1979; Kazak, 1989). Naar-King, Montepiedra, et al. (2013) assessed factors across multiple systems to prospectively predict adherence in a multisite cohort of youth who were perinatally infected with HIV. Youth awareness of HIV status, caregiver not being fully responsible for medications, low caregiver well-being, youth perceptions of poor caregivereyouth relations, caregiver perceptions of low social support, and African American race were associated with nonadherence.

The informationemotivationebehavioral skills model The InformationeMotivationeBehavioral Skills Model has been the foundation of many HIV adherence interventions (Fisher, Amico, Fisher, & Harman, 2008; Whiteley, Brown, Lally, Heck, & van den Berg, 2018). It posits that optimal adherence results from adequate information, motivation to adhere, and perceived and objective ability to adhere. There are limited predictive studies of the InformationeMotivationeBehavioral Skills Model for youth in the United States. Two qualitative studies found that the model may be applicable based on themes that emerged for adherence in youth living with HIV in Romania (Dima, Schweitzer, Amico, & Wanless, 2013) and Thailand (Rongkavilit et al., 2010).

Assessment of antiretroviral treatment adherence

291

Finally, there are limited studies of self-management behaviors beyond medication adherence. In the National Institutes of Health Adolescent Trials Network for HIV/AIDS interventions, the Five Components SelfManagement Model is being tested. The model includes five essential skills: problem-solving, decision-making, resource utilization, the patient/ heathcare provider partnership, and taking action (Grady & Gough, 2014) to predict medication adherence, PrEP uptake, substance use, and condom use (Naar, Parsons, & Stanton, 2019). Although HIV self-management requires clinic visits to monitor viral load every 3e4 months (Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents Living with HIV, 2016), only one study has assessed psychosocial predictors of appointment adherence or retention in care of youth living with HIV. Outlaw, Naar-King, Janisse, and Parsons (2010) found that low motivation and self-efficacy to attend appointments and higher levels of alcohol use, but not mental health symptoms, were associated with low HIV appointment adherence. Clearly, psychosocial predictors of engagement and retention in care in youth with HIV require further study.

Assessment of antiretroviral treatment adherence Unlike many chronic conditions, the relationship between adherence measures and health outcomes in HIV is quite strong (Simoni et al., 2006). Thus, viral suppression is often considered a good proxy for adherence (Kim, Gerver, Fidler, & Ward, 2014). Clinical adherence measures include pill counts, pharmacy refill records, and various self-report methods. Although pill counts are a more robust predictor of viral load compared with self-report in pediatric HIV (Farley et al., 2008), pill counts are difficult to obtain in clinical settings. Unannounced pill counts conducted by phone provide a rigorous and practical measure of adherence in adults (Kalichman et al., 2007) and have shown some success in youth who were perinatally infected with HIV (Raymond et al., 2017). However, this method may be impractical for behaviorally infected youth who may have more psychosocial, housing, and financial instability (Pennar et al., 2019).

Self-report measures Common self-report measures include recall procedures and visual analogue scales. The Visual Analogue Scale (Giordano, Guzman, Clark, Charlebois, & Bangsberg, 2004; Kalichman et al., 2009) for medication adherence is a single-item visual analogue rating scale that asks participants to estimate along a continuum the percentage of medication doses taken in a given time period. The scale is anchored with 0% indicating that

292

12. HIV/AIDS

no medication was taken, 50% half was taken, and 100% indicating that all medication was taken. The Visual Analogue Scale has moderate to strong correlations with other adherence measures and with viral load in adults and youth (Finitsis, Pellowski, Huedo-Medina, Fox, & Kalichman, 2016; Naar-King, Montepiedra, et al., 2013; Naar-King, Parsons, et al., 2009) and appears to be more strongly associated with viral load in youth than 7-day estimates of missed doses (MacDonell, Naar-King, Huszti, & Belzer, 2013). Daily phone diary methods have been used to assess adherence in younger children with HIV (Marhefka, Tepper, Farley, Sleasman, & Mellins, 2006). A recent study assessed the feasibility of technology-based diaries targeting HIV risk behaviors in youth with HIV (aged 16 to 24 years) and found that Internet-based diaries were preferred and showed higher retention than phone diaries (Cherenack, Wilson, Kreuzman, & Price, 2016).

Assays Hair specimen assays may have utility for assessing medication adherence (e.g., indinavir, lopinavir/ritonavir) in adults on antiretroviral treatment in the United States and Africa (Ameli et al., 2009; Gandhi et al., 2009; Tabb et al., 2017). In adult studies, hair specimens were stronger predictors of therapy success than self-report measures. Blood plasma for viral load testing as a proxy for adherence measurement requires complex specimen collection, storage, and transport. In resource-limited settings, dried blood spots, collected using capillary blood from a finger prick, are used and have shown adequate feasibility and reliability (Johannessen, Trøseid, & Calmy, 2009). A limitation is that the lower limits of virus detectability are higher than plasma and may be inadequate for detecting subtle changes in adherence. Given that homebased and self-collected sampling with adults are feasibile (van Loo, Dukers-Muijrers, Heuts, van der Sande, & Hoebe, 2017), future research may demonstrate the feasibility of this method for adherence and viral load monitoring in youth living with HIV.

Evidence-based and promising interventions Although it has been abundantly clear for more than two decades that adherence to antiretroviral treatment is a critical problem, there are a limited number of successful interventions available for youth. As of 2016, there were only 10 adherence intervention studies for youth with HIV, and many were plagued by small sample sizes and lack of rigorous designs (Shaw & Amico, 2016). Similarly, as of 2018, for youth living with

Evidence-based and promising interventions

293

HIV in low- and middle-income countries, no adherence intervention studies exclusively focused on young populations (Shaw & Amico, 2016). The few interventions that have shown promise either in full-scale RCTs or in rigorous pilot trials are described next. Motivational Interviewing (Miller & Rollnick, 2012) provides a highly specified, evidenced-based framework for improving patienteprovider communication and promoting behavior change by strengthening a person’s intrinsic motivation in an atmosphere of acceptance and compassion. Motivational Interviewing has been adapted for adolescents and young adults with HIV (Naar-King & Suarez, 2011). Healthy Choices is a 12-week, four-session manualized intervention that combines Motivational Interviewing with personalized feedback on behavior and goal setting (Naar-King, Wright, Parsons, Frey, Templin, Lam, et al., 2006) to improve adherence to antiretrovial treatment and reduce sexual risk and substance use in youth with HIV. In a multisite trial, youth living with HIV were randomized to Healthy Choices plus multidisciplinary specialty care compared with multidisciplinary specialty care alone (Naar-King, Parsons, et al., 2009). Significant effects were maintained at 9 months in the pilot (6 months posttreatment; Naar-King et al., 2008), but viral load improvements were not sustained in the larger trial. Healthy Choices has been adapted for Thai youth and shown to have effects on sexual risk behavior (Rongkavilit et al., 2013, 2014), but its effect on adherence and viral load has not been tested in a randomized trial. The Motivational Enhancement System for Adherence is a computerdelivered Motivational Interviewing Intervention designed to prevent adherence problems in youth newly beginning HIV medication. Two 30minute sessions are delivered 1 month apart and are based on the InformationeMotivationeBehavioral Skills model. The intervention is tailored in multiple ways (Outlaw et al., 2014). Examples of tailoring include (1) the interactive intervention is based on Motivational Interviewing principles (e.g., the avatar reflects participants’ motivational language and affirms behave change intentions); (2) participants are routed through the program based on their ratings of importance and confidence and goals; (3) participants receive feedback and medication information based on their medical information and HIV treatment knowledge; and (4) participants can choose features of the intervention platform (character, audio setting). In a pilot randomized trial comparing Motivational Enhancement System for Adherence to a similar program targeting nutrition and physical activity in youth with HIV 16e24 years of age, effect sizes for adherence and viral load suppression were medium to large at 3- and 6-month follow-up (Naar-King, Montepiedra, et al., 2013). Two additional studies suggest the utility of mHealth to improve adherence in youth with HIV. Garofalo et al. (2016) found that daily text message reminders for 6 months improved self-reported adherence

294

12. HIV/AIDS

posttreatment and at 12-month follow-up compared with treatment as usual in individuals 16e29 years. Viral load, however, was not assessed. Belzer et al. (2014) found that 3 months of cell phone support calls with incentives for answering calls were effective in improving adherence and viral load compared with standard care, with significant effects at 3 and 6 months in a small sample of individuals with HIV aged 16e24 years. A sequential multiple assignment randomized trial is underway to detangle the effects of text messaging and cell phone support with and without incentives (Belzer et al., 2018). This trial is also exploring the impact of gradually reducing the number of contacts received as part of the intervention. Although the interventions described previously focused on adolescents and young adults with HIV, Multisystemic Therapy has been used with adolescents with HIV up to 17 years (Ellis, Naar-King, Cunningham, & Secord, 2006; Letourneau, Ellis, Naar-King, Cunningham, & Fowler, 2010; Letourneau et al., 2013). Multisystemic Therapy is an intensive, family- and community-based intervention approach, originating in mental health settings and grounded in the socialeecological model. Specifically, Multisystemic Therapy for Health Care addresses barriers within and between the individual, familial, and extrafamilial systems. Letourneau et al. (2013) adapted Multisystemic Therapy for Health Care to support youth with HIV in rural locations, with Skype-based weekly supervision meetings and the addition of a community health worker who performed routine tasks (e.g., pill counts) to reduce therapist burden. In a randomized clinical trial in the South with youth aged 9e17 years comparing Multisystemic Therapy with a single session of Motivational Interviewing, retention was high and effects on viral load were significant at 6- and 9-month follow-up (Letourneau et al., 2013). For appointment adherence and retention in care, one pilot study (NaarKing, Outlaw, Green-Jones, Wright, & Parsons, 2009) compared two sessions of Motivational Interviewing delivered by a peer versus a master’s level clinician. The study found both groups had improved appointment adherence 1 year postintervention. Peers achieved higher rates of intervention fidelity than clinicians, suggesting that community health workers could deliver the intervention with proper training and supervision. Finally, Webb, Perry-Parrish, Ellen, & Sibinga, (2018) randomized youth living with HIV aged 14e22 ages to a mindfulness-based stress reduction group program or to a health education program matched for format, session number, and length. The nine-session mindfulness-based stress reduction program included didactic material, experiential practice of techniques, and discussions on the application to everyday life. Youth in the mindfulness-based stress reduction condition were more likely to maintain or reduce viral load than those in the control group.

Case study

295

Case study Jamal is a 21-year-old African American biological male who identifies as a man who has sex with men and was diagnosed with HIV at 17 years of age. He had two boyfriends at the time (aged 18 and 30 years) and believes one of them gave him HIV. He has not had contact with either partner since confronting them about his HIV status, although he believes they both were tested by the local health department afterward. Jamal entered medical care shortly after finding out about his HIV status; he formed a connection with the outreach worker and nurse but only intermittently attended appointments. However, as he became more comfortable with other staff, his appointment adherence improved to four times per year. Jamal was prescribed antiretroviral treatment a month after his initial medical visit and has struggled significantly with adherence since. His first line of antiretroviral treatment was Reyataz, Norvir, and Truvada (three pills once a day) as this combination is more forgiving when doses are missed. He was then switched to Atripla, one pill once a day, to decrease pill burden and reported side effects. Jamal presently lives in his family home with his older sister and young nieces (aged 4 and 6 years), whom he often babysits. Jamal has had significant conflict with his stepfather, who was often verbally abusive, but has since divorced from his mother. Once Jamal “came out” to his family, his stepfather became more negative, physically aggressive, and emotionally abusive. He was initially reluctant to inform them of his HIV status for fear of further hurt and rejection. His mother and sisters have been supportive of him, although Jamal often withholds confiding in them and when he may need help. Jamal graduated from high school on time with moderate challenges, and enrolled in a general education program, Jamal is currently working part-time at a restaurant as a host and dish washer/bus boy. He has a history of trauma and depression, although never exhibited suicidal ideations or attempts, nor has he been hospitalized for mental health concerns. He was previously physical and sexually assaulted several times and again after contracting HIV. He has been the victim of physical assaults (i.e., jumped, robbed), and he was gang raped at a party a few months after finding out about his status. Jamal smokes tobacco and has a history of intermittent and binge drinking that often leads to an increase in riskier sexual behavior, including contracting sexually transmitted infections. Although he has experimented with marijuana and cocaine, these are not his drugs of choice. Jamal often described feelings of worthlessness, sadness, guilt, and shame, occasionally withdrawing from friends and family. When he is significantly depressed, about every few months, he sleeps significantly

296

12. HIV/AIDS

more, cries or feels as if he could cry all day, experiences loss of appetite, and presents with a flat affect and depressed mood. To sometimes combat these feeling of inertia, he went to clubs/bars to binge drink. This occasionally resulted in “hooking up” with someone he met and engaging in sex and/or getting into an argument with someone. He regretted these actions and engaged in self-criticism about them. During these periods, Jamal also isolated himself and disappeared from the clinic. He did not return phone calls from the advocate or social workers, often missed scheduled appointments, and stopped taking any medications. He did not endorse suicidal ideation but verbalized that he saw “no purpose” in taking his medications and expressed that if it were meant for him to live, then it would happen regardless of following his regimen. Initially, he was not interested in starting a regimen, in part because he did not understand its purpose and worried that this was an indicator that he was “sick” and near death. Once he understood more about medications, he was willing to “try” them. His reported barriers included forgetting and how to incorporate medications into his daily schedule, especially when there was little structure and routine. He often verbalized that he “did not like the idea of meds” and did not want to take them. He had difficulty keeping them in a place that was private and accessible. To combat the side effects, he found that he needed to take medication with food. However, when depressed, he did not have an appetite and at times he did not have access to enough food. In general, when he was struggling with depression, he was more likely to miss medications. The medical team attempted to adjust the medication regimen and offered medication to address side effects. Despite their efforts, Jamal felt that the team did not understand him or comprehend how difficult this was for him to do. Jamal has had many medical complications as a result of poor medication adherence as evidenced by a high viral load and low T cell or CD4 count (immune system functioning), exacerbated by smoking, including pneumocystis pneumonia several times a year, which leads to hospitalizations, bronchitis, illnesses that last longer than average, acquiring infections despite being vaccinated (i.e., pertussis, flu), and missed time working or socializing. After working with the outreach worker and nurse to access medication devices and setting alarms with limited success, he was referred to the clinic psychologist.

Interventions Jamal first participated in the Healthy Choices Trial, which provided four sessions of Motivational Interviewing to increase motivation for adherence and reductions in alcohol use. After participation led to an increase in intrinsic motivation, the psychologist was able to engage Jamal

Emerging areas and conclusions

297

in cognitive-behavioral skills training to address thoughts and feelings about being HIV positive and practice medication-taking skills in the context of anxious and depressed mood. He was not prepared to initiate medications for depression, but he was willing to explore cognitive restructuring, mindfulness, and distress tolerance approaches. Jamal began to identify thoughts of stigma and shame, which led to emotional responses that interfered with self-management. He articulated that taking medications was a forceful reminder of having HIV, which made him feel dirty, angry (at partner for giving him this), angry at himself for not protecting himself, giving away his power in the relationship, having sex with multiple partners, and being assaulted. He also began to identify feelings of guiltdguilt around being gay, for “doing this to himself,” linking being HIV positive with proof that he is a bad and despicable person and deserves “what he gets” and should be and continually is punished. For Jamal, taking medications reminded him of his shame. He was open and willing to try some mindfulness strategies and liked the idea of focusing on his breathing and being in the moment. He practiced mindful breathing and walking at least once a day for 10 minutes. Beginning individual therapy was vital to addressing depression and feelings of shame. He experienced an increase in medication adherence, viral load reduction, and a decrease in drinking and sexual risk behaviors. Other strategies employed that were helpful included daily texting. It began with the psychosocial team sending text messages daily as a reminder to take medications and across time this strategy changed to Jamal texting the team daily following taking medications and team responding positively. This process was on his terms and enabled him to feel that his providers cared for him and that the intervention was efficacious. In addition, he began to participate in clinic social functions, and he occasionally attended the support group. Jamal recently had his medication changed to once a day Biktarvy (bictegravir/emtricitabine/ tenofovir alafenamide), which is smaller and easier to tolerate, and within 8 weeks, his HIV was undetectable. He continues to dislike having to take medications, but no longer sees it as punishment. Each day he is choosing to live unencumbered and on his own terms, while his mental and physical health improves.

Emerging areas and conclusions New directions in eHealth As noted previously, mHealth interventions show significant promise for improving adherence and health outcomes in youth with HIV at potentially low cost. There is emerging evidence that these interventions

298

12. HIV/AIDS

may be particularly attractive to sexual and/or gender minority youth (Steinke, Root-Bowman, Estabrook, Levine, & Kantor, 2017), who are disproportionately impacted by HIV and may experience feelings of isolation and stigmatization. One of the research programs within the Adolescent Trials for HIV/AIDS, iTech, is focusing on technology-based interventions for adolescent HIV treatment and prevention (L. HightowWeidman et al., 2018, L. B. Hightow-Weidman et al., 2018). A gaming and social networking intervention, AllyQuest, to improve adherence in youth has been found to be feasible (L. Hightow-Weidman et al., 2018, L. B. Hightow-Weidman et al., 2018). A self-monitoring component provides reminders and personalized strategies, and a calendar allows for reflection on adherence across time. Strong feasibility and acceptability were demonstrated with youth with HIV. All were men who have sex with men and 95% were nonwhite. Higher levels of app usage were associated with HIV self-management, with number of days logged into the app associated with medication knowledge and self-efficacy.

Prospective memory Most cross-sectional adherence studies have focused on social cognitive factors, but when investigators ask youth why they miss medications, the most common answer is “I forgot” (MacDonell et al., 2013; Murphy et al., 2003). Prospective memory is the neurocognitive capacity to successfully form, maintain, and execute an intention in the future in response to a specific cue (see Zogg, Woods, Sauceda, Weibe, & Simoni, 2011). Encoding and cueeintention pairing strategies improve prospective memory in lab-based studies with youth with HIV (Faytell et al., 2017, 2018), and a single in-person session focusing on using visualization to encode cueeintention pairings combined with implementation intentions for barriers to medication adherence in youth with HIV shows promise (Pennar et al., 2019). More studies related to prospective memory and executive functioning are warranted.

Prevention of cardiovascular disease There is increasing evidence demonstrating increased cardiovascular disease for persons living with HIV (Freiberg et al., 2013; Friis-Møller et al., 2003; Islam, Wu, Jansson, & Wilson, 2012). However this increase in life expectancy is hindered by increased evidence of cardiovascular disease risk (Group, 2010). Studies suggest that these risks are already present in young adults living with HIV (Beregszaszi et al., 2005; Santiprabhob et al., 2017; Syed et al., 2013). Lifestyle factors associated with cardiovascular disease such as obesity and smoking are highly

Emerging areas and conclusions

299

prevalent among persons with HIV (Crum-Cianflone, Tejidor, Medina, Barahona, & Ganesan, 2008; Reynolds, 2009). One study in the United States showed that youth with HIV had lower scores on physical fitness measures compared with healthy controls (Somarriba et al., 2013). One study of youth in Brazil showed lower rates of physical activity compared with matched peers. A critical direction for self-management interventions for youth with HIV will include focusing on physical activity and nutrition and reducing smoking. To date, one feasibility study showed that youth could be retained in a home-based physical activity program, resulting in improved physical fitness and reduction in viral load (Bulls, Naar-King, & Brogan Hartlieb).

Preexposure prophylaxis PrEP is indicated as a prevention intervention for populations with an estimated HIV incidence of >3% (Fonner et al., 2016). Adherence is critical to PrEP efficacy, and recent evidence suggests that feminizing hormone therapy may reduce levels of tenofovir in plasma requiring greater adherence rates in transgender populations receiving such therapy (Cottrell et al., 2018; Hiransuthikul et al., 2018). Youth are less likely to initiate PrEP compared with adults (Mera et al., 2017), and discontinuation rates (Morgan, Ryan, Newcomb, & Mustanski, 2018) and nonadherence rates are high (S. Hosek et al., 2017, S. G. Hosek et al., 2017). Research on PrEP adherence interventions in young people is in its infancy, although mHealth interventions show promise (Liu et al., 2019).

Dissemination and implementation research The full benefits of interventions currently available have yet to be realized in youth, in large part because evidence-based interventions have not been implemented in real-world settings (MacPherson et al., 2015). The National Institutes of Health Office of AIDS Research called for implementation science to address the behavioral research practice gap (Pangaea Global AIDS Foundation, 2009). Implementation science is the scientific study of methods to promote the uptake of research findings and evidence-based practices to improve the quality of behavior change approaches in healthcare settings (Eccles et al., 2009). Although there has been some research on implementation of HIV prevention interventions (Norton, Amico, Cornman, Fisher, & Fisher, 2009), there has been considerably less attention paid to implementation science in HIV care settings (Schackman, 2010) and even less in HIV youth care settings. Another program in the Adolescent Trials Network, Scale It Up (Naar et al., 2019), focuses on implementation science with four research projects using effectivenesseimplementation hybrid designs (Curran, Bauer,

300

12. HIV/AIDS

Mittman, Pyne, & Stetler, 2012). Two studies are type 1 hybrid (effectiveness aims primary, and implementation aims secondary), including the cell phone support study described previously and a Motivational Interviewing-based couples HIV testing intervention study. One study is a type 2 hybrid (both effectiveness and implementation aim primary) testing a four-session Motivational Interviewing Intervention to reduce sexual risk and substance abuse. The fourth study is a type 3 hybrid (implementation aims primary, and effectiveness aims secondary) addressing uptake and sustainment of Motivational Interviewing fidelity across multiple disciplines in 10 adolescent HIV clinics. All four studies assess implementation context using the same theoretical model, the Exploration, Preparation, Implementation Sustainment model (Aarons, Hurlburt, & Horwitz, 2011). Audio recordings of real or simulated patienteprovider interactions across all four projects will be sequentially analyzed (Idalski Carcone et al., 2013) to understand provider communication behaviors that immediately predict youth motivational statements related to self-management. Dramatic decreases in HIV transmission are achievable with antiretroviral treatment, PrEP, and rapid testing; however, such decreases have not yet been realized among youth. Our goal must be complete selfmanagement, as mathematical modeling indicates that even achieving 90% adherence at different points on the cascade is insufficient to curb the epidemic (Gardner et al., 2011). Self-management is critical and complex at any age but may be especially challenging among adolescents and young adults as they transition to increasingly independent selfmanagement (Giarelli, Bernhardt, Mack, & Pyeritz, 2008) during developmental periods marked by identity exploration, development of new social networks, increased opportunities and choices, both positive and risk-laden (Chambers, Taylor, & Potenza, 2003), and increased independence and risk-taking behavior (Parsons, Halkitis, Bimbi, & Borkowski, 2000; Parsons, Siegel, & Cousins, 1997). Given these challenges, it is not surprising that self-management tends to deteriorate during this transitional period (MacDonell et al., 2010, 2013). New approaches to HIV education, prevention, and treatment of youth must be integrated with issues in self-management to achieve an AIDS-free generation and/or the end of the AIDS epidemic by 2030 in the United States and globally (Fauci & Folkers, 2012; Joint United Nations Programme on HIV/AIDS (UNAIDS, 2014). To date, the youth HIV research portfolio has not adequately advanced this important care area (MacPherson et al., 2015). Developing and testing self-management interventions and scientifically implementing them in real-world settings are necessary to achieve 90-9090 goals (90% test, 90% treatment, 90% suppressed viral load) (Wong, Murray, Phelps, Vermund, & McCarraher, 2017).

References

301

References Aarons, G. A., Hurlburt, M., & Horwitz, S. M. (2011). Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 4e23. Ameli, N., Bacchetti, P., Huang, Y., Gange, S. J., Anastos, K., Levine, A., & al, e. (2009). Concentration of efavirenz in hair are strongly correlated with virologic response (abstract 692). In Paper presented at the 16th conference on retroviruses and opportunistic infections (CROI), Montreal, Canada. Bangsberg, D. (2010). International perspectives on adherence and resistance to HIV antiretroviral therapy. Journal of the International AIDS Society, 13(Suppl. 4), O2. Belzer, M. E., Fuchs, D. N., Luftman, G. S., & Tucker, D. J. (1999). Antiretroviral adherence issues among HIV-positive adolescents and young adults. Journal of Adolescent Health, 25(5), 316e319. Belzer, M. E., MacDonell, K. K., Ghosh, S., Naar, S., McAvoy-Banerjea J., Gurung, S., … Parsons, J. T. (2018). Adaptive antiretroviral therapy adherence interventions for youth living with HIV through text message and cell phone support with and without incentives: Protocol for a sequential multiple assignment randomized trial (SMART). JMIR Res Protoc, 7(12), e11183. Belzer, M. E., Naar-King, S., Olson, J., Sarr, M., Thornton, S., Kahana, S. Y., … Clark, L. F. (2014). The use of cell phone support for non-adherent HIV-infected youth and young adults: An initial randomized and controlled intervention trial. AIDS and Behavior, 1e11. Benator, D. A., Elmi, A., Rodriguez, M. D., Gale, H. B., Kan, V. L., Hoffman, H. J., … Squires, L. (2015). True durability: HIV virologic suppression in an urban clinic and implications for timing of intensive adherence efforts and viral load monitoring. AIDS and Behavior, 19(4), 594e600. Beregszaszi, M., Dollfus, C., Levine, M., Faye, A., Deghmoun, S., Bellal, N., … Bresson, J.-L. (2005). Longitudinal evaluation and risk factors of lipodystrophy and associated metabolic changes in HIV-infected children. JAIDS Journal of Acquired Immune Deficiency Syndromes, 40(2), 161e168. Bronfenbrenner, U. (1979). The ecology of human development: Experiments by design and nature. Cambridge, MA: Harvard University Press. Brown, L. B., Ayieko, J., Mwangwa, F., Owaraganise, A., Kwarisiima, D., Jain, V., … Chamie, G. (2017). Predictors of retention in HIV care among youth (15e24) in a universal test-and-treat setting in rural Kenya. JAIDS Journal of Acquired Immune Deficiency Syndromes, 76(1), e15ee18. Bulls, M., Naar-King, S., & Brogan Hartlieb, K. Improving health outcomes with home-based personal fitness coaching in young adults with HIV. Paper presented at the American Psychological Association, Toronto, ON. Center for Disease Control and Prevention (CDC). (2016). HIV surveillance report, 2016. Retrieved from http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Centers for Disease Control and Prevention. (2012). Vital signs: HIV infection, testing, and risk behaviors among youths e United States. Morbidity and Mortality Weekly Report (MMWR), 61(47), 971e976. Chambers, R. A., Taylor, J. R., & Potenza, M. N. (2003). Developmental neurocircuitry of motivation in adolescence: A critical period of addiction vulnerability. American Journal of Psychiatry, 160(6), 1041e1052. https://doi.org/10.1176/appi.ajp.160.6.1041. Cherenack, E. M., Wilson, P. A., Kreuzman, A. M., & Price, G. N. (2016). The feasibility and acceptability of using technology-based daily diaries with HIV-infected young men who have sex with men: A comparison of internet and phone modalities. AIDS and Behavior, 20, 1744e1753.

302

12. HIV/AIDS

Cohen, M. S., Chen, Y. Q., McCauley, M., Gamble, T., Hosseinipour, M. C., Kumarasamy, N., … Fleming, T. R. (2016). Antiretroviral therapy for the prevention of HIV-1 transmission. New England Journal of Medicine, 375(9), 830e839. https://doi.org/10.1056/ NEJMoa1600693. Cohen, M. S., McCauley, M., & Gamble, T. R. (2012). HIV treatment as prevention and HPTN 052. Current Opinion in HIV and AIDS, 7(2), 99. Cottrell, M. L., Prince, H., Maffuid, K., Poliseno, A., White, N., Sykes, C., … HightowWeidman, L. (2018). Altered TDF/FTC pharmacology in a transgender female cohort: Implications for PrEP. In Paper presented at the journal of the international AIDS society. Crum-Cianflone, N., Tejidor, R., Medina, S., Barahona, I., & Ganesan, A. (2008). Obesity among patients with HIV: The latest epidemic. AIDS Patient Care and STDs, 22(12), 925e930. Curran, G. M., Bauer, M., Mittman, B., Pyne, J. M., & Stetler, C. (2012). Effectivenessimplementation hybrid designs: Combining elements of clinical effectiveness and implementation research to enhance public health impact. Medical Care, 50(3), 217e226. Das, M., Chu, P. L., Santos, G.-M., Scheer, S., Vittinghoff, E., McFarland, W., & Colfax, G. N. (2010). Decreases in community viral load are accompanied by reductions in new HIV infections in San Francisco. PLoS One, 5(6), e11068. https://doi.org/10.1371/ journal.pone.0011068. Dima, A. L., Schweitzer, A.-M., Amico, K. R., & Wanless, R. S. (2013). The informationmotivation-behavioral skills model of antiretroviral treatment adherence in Romanian young adults. Journal of HIV/AIDS and Social Services, 12(3e4), 274e293. https:// doi.org/10.1080/15381501.2012.749819. Dinaj-Koci, V., Wang, B., Naar-King, S., & MacDonell, K. K. (2019). A multi-site study of social cognitive factors related to adherence among youth living with HIV in the new era of antiretroviral medication. Journal of Pediatric Psychology, 44(1), 98e109. https://doi.org/ 10.1093/jpepsy/jsy076. Eccles, M. P., Armstrong, D., Baker, R., Cleary, K., Davies, H., Davies, S., & Sibbald, B. (2009). An implementation research agenda. Implementation Science, 4, 18. https://doi.org/ 10.1186/1748-5908-4-18. El-Sadr, W. M., Holmes, C. B., Mugyenyi, P., Thirumurthy, H., Ellerbrock, T., Ferris, R., … Whiteside, A. (2012). Scale-up of HIV treatment through PEPFAR: A historic public health achievement. Journal of Acquired Immune Deficiency Syndromes, 60(Suppl. 3), S96eS104. https://doi.org/10.1097/QAI.0b013e31825eb27b. Ellis, D. A., Naar-King, S., Cunningham, P. B., & Secord, E. (2006). Use of multisystemic therapy to improve antiretroviral adherence and health outcomes in HIV-infected pediatric patients: Evaluation of a pilot program. AIDS Patient Care and STDs, 20(2), 112e121. Farley, J. J., Montepiedra, G., Storm, D., Sirois, P. A., Malee, K., Garvie, P., … Nichols, S. (2008). Assessment of Adherence to antiretroviral therapy in perinatally HIV- infected children and youth using self-report measures and pill counting. Journal of Developmental and Behavioral Pediatrics, 29, 377e384. Fauci, A. S., & Folkers, G. K. (2012). Toward an aids-free generation. Journal of the American Medical Association, 308(4), 343e344. https://doi.org/10.1001/jama.2012.8142. Faytell, M. P., Doyle, K. L., Naar-King, S., Outlaw, A. Y., Nichols, S. L., Casaletto, K. B., & Woods, S. P. (2017). Visualisation of future task performance improves naturalistic prospective memory for some younger adults living with HIV disease. Neuropsychological Rehabilitation, 27(8), 1142e1155. Faytell, M. P., Doyle, K., Naar-King, S., Outlaw, A., Nichols, S., Twamley, E., & Woods, S. P. (2018). Calendaring and alarms can improve naturalistic time-based prospective memory for youth infected with HIV. Neuropsychological Rehabilitation, 28(6), 1038e1051. Finitsis, D. J., Pellowski, J. A., Huedo-Medina, T. B., Fox, M. C., & Kalichman, S. C. (2016). Visual analogue scale (VAS) measurement of antiretroviral adherence in people living

References

303

with HIV (PLWH): A meta-analysis. Journal of Behavioral Medicine, 39(6), 1043e1055. https://doi.org/10.1007/s10865-016-9770-6. Fisher, J. D., Amico, K. R., Fisher, W. A., & Harman, J. J. (2008). The information-motivationbehavioral skills model of antiretroviral adherence and its applications. Current HIV/ AIDS Reports, 5(4), 193e203. Fonner, V. A., Dalglish, S. L., Kennedy, C. E., Baggaley, R., O’Reilly, K. R., Koechlin, F. M., … Grant, R. M. (2016). Effectiveness and safety of oral HIV preexposure prophylaxis for all populations. AIDS (London, England), 30(12), 1973e1983. https://doi.org/10.1097/ QAD.0000000000001145. Freiberg, M. S., Chang, C.-C. H., Kuller, L. H., Skanderson, M., Lowy, E., Kraemer, K. L., … Oursler, K. A. (2013). HIV infection and the risk of acute myocardial infarction. JAMA Internal Medicine, 173(8), 614e622. Frieden, T. R., Foti, K. E., & Mermin, J. (2015). Applying public health principles to the HIV epidemic d how are we doing? New England Journal of Medicine, 373(23), 2281e2287. https://doi.org/10.1056/NEJMms1513641. Friis-Møller, N., Weber, R., Reiss, P., Thie´baut, R., Kirk, O., Monforte, A.d. A., … Law, M. (2003). Cardiovascular disease risk factors in HIV patientseassociation with antiretroviral therapy. Results from the DAD study. AIDS, 17(8), 1179e1193. Gandhi, M., Ameli, N., Bacchetti, P., Gange, S. J., Anastos, K., Levine, A., … Women’s Interagency HIV Study. (2009). Protease inhibitor levels in hair strongly predict virologic response to treatment. AIDS, 23(4), 471e478. Gardner, E. M., McLees, M. P., Steiner, J. F., del Rio, C., & Burman, W. J. (2011). The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clinical Infectious Diseases: An Official Publication of the Infectious Diseases Society of America, 52(6), 793e800. https://doi.org/10.1093/cid/ciq243. Garofalo, R., Kuhns, L. M., Hotton, A., Johnson, A., Muldoon, A., & Rice, D. (2016). A randomized controlled trial of personalized text message reminders to promote medication adherence among HIV-positive adolescents and young adults. AIDS and Behavior, 20(5), 1049e1059. Giarelli, E., Bernhardt, B. A., Mack, R., & Pyeritz, R. E. (2008). Adolescents’ transition to selfmanagement of a chronic genetic disorder. Qualitative Health Research, 18(4), 441e457. https://doi.org/10.1177/1049732308314853. Giordano, T. P., Guzman, D., Clark, R., Charlebois, E., & Bangsberg, D. (2004). Measuring adherence to antiretroviral therapy in a diverse population using a visual analogue scale. HIV Clinical Trials, 5(02), 74e79. Grady, P. A., & Gough, L. L. (2014). Self-management: A comprehensive approach to management of chronic conditions. American Journal of Public Health, 104(8), e25ee31. https://doi.org/10.2105/AJPH.2014.302041. Gray, R. H., Kiwanuka, N., Quinn, T. C., Sewankambo, N. K., Serwadda, D., Mangen, F. W., … Wawer, M. J. (2000). Male circumcision and HIV acquisition and transmission: Cohort studies in Rakai, Uganda. Rakai Project Team. AIDS, 14(15). Data Collection on Adverse Events of Anti-HIV(D: A: D) Study Group. (2010). Factors associated with specific causes of death amongst HIV-positive individuals in the D: A: D study. AIDS, 24(10), 1537e1548. Guidelines for the use of antiretroviral agents in adults and adolescents living with HIV.(2016). USA, Washington DC: AIDS Info. Hightow-Weidman, L., Muessig, K., Knudtson, K., Srivatsa, M., Lawrence, E., LeGrand, S., … Hosek, S. (2018). A gamified smartphone app to support engagement in care and medication adherence for HIV-positive young men who have sex with men (AllyQuest): Development and pilot study. JMIR Public Health and Surveillance, 4(2). Hightow-Weidman, L. B., Muessig, K., Rosenberg, E., Sanchez, T., LeGrand, S., Gravens, L., & Sullivan, P. S. (2018b). University of North Carolina/emory center for innovative

304

12. HIV/AIDS

technology (iTech) for addressing the HIV epidemic among adolescents and young adults in the United States: Protocol and rationale for center development. JMIR Research Protocols, 7(8), e10365. https://doi.org/10.2196/10365. Hiransuthikul, A., Himmad, K., Kerr, S., Thammajaruk, N., Pankam, T., Janamnuaysook, R., … Phanuphak, N. (2018). Drug-drug interactions between the use of feminizing hormone therapy and pre-exposure prophylaxis among transgender women: The iFACT study. In Paper presented at the journal of the international AIDS society. Hosek, S. G., Harper, G. W., & Domanico, R. (2005). Predictors of medication adherence among HIV-infected youth. Psychology Health and Medicine, 10(2), 166e179. Hosek, S. G., Landovitz, R. J., Kapogiannis, B., Siberry, G. K., Rudy, B., Rutledge, B., … Zimet, G. (2017). Safety and feasibility of antiretroviral preexposure prophylaxis for adolescent men who have sex with men aged 15 to 17 years in the United States. JAMA Pediatrics, 171(11), 1063e1071. Hosek, S., Rudy, B., Landovitz, R., Kapogiannis, B., Siberry, G., Rutledge, B., … Zimet, G. (2017). An HIV pre-exposure prophylaxis (PrEP) demonstration project and safety study for young MSM. Journal of Acquired Immune Deficiency Syndromes(1999), 74(1), 21. Idalski Carcone, A., Naar-King, S., Brogan, K., Albrecht, T., Barton, E., Foster, T., … Marshall, S. (2013). Provider communication behaviors that predict motivation to change in African American adolescents with obesity. Journal of Developmental and Behavioral Pediatrics, 34(8), 599e608. Islam, F., Wu, J., Jansson, J., & Wilson, D. (2012). Relative risk of cardiovascular disease among people living with HIV: A systematic review and meta-analysis. HIV Medicine, 13(8), 453e468. Johannessen, A., Trøseid, M., & Calmy, A. (2009). Dried blood spots can expand access to virological monitoring of HIV treatment in resource-limited settings. Journal of Antimicrobial Chemotherapy, 64(6), 1126e1129. Joint United Nations Programme on HIV/AIDS (UNAIDS). (2014). Fast-track e ending the AIDS epidemic by 2030 (JC2686). Geneva Retrieved from http://www.unaids.org/en/ resources/documents/2014/JC2686_WAD2014report. Kalichman, S. C., Amaral, C. M., Stearns, H., White, D., Flanagan, J., Pope, H., … Kalichman, M. O. (2007). Adherence to antiretroviral therapy assessed by unannounced pill counts conducted by telephone. Journal of General Internal Medicine, 22(7), 1003. Kalichman, S. C., Amaral, C. M., Swetzes, C., Jones, M., Macy, R., Kalichman, M. O., & Cherry, C. (2009). A simple single-item rating scale to measure medication adherence: Further evidence for convergent validity. Journal of the International Association of Physicians in AIDS Care (JIAPAC), 8(6), 367e374. https://doi.org/10.1177/1545109709352884. Kanters, S., Mills, E. J., Thorlund, K., Bucher, H. C., & Ioannidis, J. P. A. (2014). Antiretroviral therapy for initial human immunodeficiency virus/AIDS treatment: Critical appraisal of the evidence from over 100 randomized trials and 400 systematic reviews and metaanalyses. Clinical Microbiology and Infections, 20(2), 114e122. https://doi.org/10.1111/ 1469-0691.12475. Kazak, A. E. (1989). Families of chronically ill children: A systems and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(1), 25e30. Kim, S.-H., Gerver, S. M., Fidler, S., & Ward, H. (2014). Adherence to antiretroviral therapy in adolescents living with HIV: Systematic review and meta-analysis. AIDS (London, England), 28(13), 1945. Kobin, A. B., & Sheth, N. U. (2011). Levels of adherence required for virologic suppression among newer antiretroviral medications. Annals of Pharmacotherapy, 45(3), 372e379.

References

305

Letourneau, E. J., Ellis, D. A., Naar-King, S., Chapman, J. E., Cunningham, P. B., & Fowler, S. (2013). Multisystemic therapy for poorly adherent youth with HIV: Results from a pilot randomized controlled trial. AIDS Care, 25(4), 507e514. Letourneau, E. J., Ellis, D. A., Naar-King, S., Cunningham, P. B., & Fowler, S. L. (2010). Case study: Multisystemic therapy for adolescents who engage in HIV transmission risk behaviors. Journal of Pediatric Psychology, 35(2), 120e127. https://doi.org/10.1093/ jpepsy/jsp087. Liu, A. Y., Vittinghoff, E., von Felton, P., Amico, K. R., Anderson, P. L., Leser, R., … Fuchs, J. D. (2019). Randomized controlled trial of a mobile health intervention to promote retention and adherence to preexposure prophylaxis among young people at risk for human immunodeficiency virus: The EPIC Study. Clinical Infectious Diseases, 68(12), 2010e2017. van Loo, I. H., Dukers-Muijrers, N. H., Heuts, R., van der Sande, M. A., & Hoebe, C. J. (2017). Screening for HIV, hepatitis B and syphilis on dried blood spots: A promising method to better reach hidden high-risk populations with self-collected sampling. PLoS One, 12(10), e0186722. MacDonell, K. K., Jacques-Tiura, A. J., Naar, S., Fernandez, M. I., & ATN 086/106 Protocol Team. (2016). Predictors of self-reported adherence to antiretroviral medication in a multisite study of ethnic and racial minority HIV-positive youth. Journal of Pediatric Psychology, 41(4), 419e428. https://doi.org/10.1093/jpepsy/jsv097. MacDonell, K., Naar-King, S., Huszti, H., & Belzer, M. (2013). Barriers to medication adherence in behaviorally and perinatally infected youth living with HIV. AIDS and Behavior, 17(1), 86e93. MacDonell, K. E., Naar-King, S., Murphy, D. A., Parsons, J. T., & Harper, G. W. (2010). Predictors of medication adherence in high risk youth of color living with HIV. Journal of Pediatric Psychology, 35(6), 593e601. https://doi.org/10.1093/jpepsy/jsp080. MacPherson, P., Munthali, C., Ferguson, J., Armstrong, A., Kranzer, K., Ferrand, R. A., & Ross, D. A. (2015). Service delivery interventions to improve adolescents’ linkage, retention and adherence to antiretroviral therapy and HIV care. Tropical Medicine and International Health, 20(8), 1015e1032. https://doi.org/10.1111/tmi.12517. Marhefka, S. L., Tepper, V. J., Farley, J. J., Sleasman, J. W., & Mellins, C. A. (2006). Brief Report: Assessing adherence to pediatric antiretroviral regimens using the 24-hour recall interview. Journal of Pediatric Psychology, 31, 989e994. McGrady, M. E., Ryan, J. L., Brown, G. A., & Cushing, C. C. (2015). Topical review: Theoretical frameworks in pediatric adherence-promotion interventions: Research findings and methodological implications. Journal of Pediatric Psychology, 40(8), 721e726. https:// doi.org/10.1093/jpepsy/jsv025. Mera, R., Magnuson, D., Trevor, H., Bush, S., Rawlings, K., & McCallister, S. (2017). Changes in Truvada for HIV pre-exposure prophylaxis utilization in the USA: 2012e2016. In Paper presented at the 9th international AIDS society conference on HIV science. Paris, France. Miller, W. R., & Rollnick, S. (2012). Motivational interviewing: Helping people change. Guilford Press. Morgan, E., Ryan, D. T., Newcomb, M. E., & Mustanski, B. (2018). High rate of discontinuation may diminish PrEP coverage among young men who have sex with men. AIDS and Behavior, 1e4. Murphy, D. A., Belzer, M., Durako, S. J., Sarr, M., Wilson, C. M., Muenz, L. R., & Adolescent Medicine HIV/AIDS Research Network. (2005). Longitudinal antiretroviral adherence among adolescents infected with human immunodeficiency virus. Archives of Pediatrics and Adolescent Medicine, 159(8), 764e770. https://doi.org/10.1001/archpedi.159.8.764. Murphy, D. A., Sarr, M., Durako, S. J., Moscicki, A. B., Wilson, C. M., & Muenz, L. R. (2003). Barriers to HAART adherence among human immunodeficiency virus-infected adolescents. Archives of Pediatrics and Adolescent Medicine, 157(3), 249.

306

12. HIV/AIDS

Naar-King, S., Arfken, C., Frey, M., Harris, M., Secord, E., & Ellis, D. (2006). Psychosocial factors and treatment adherence in pediatric HIV/AIDS. AIDS Care, 18(6), 621e628. Naar-King, S., Lam, P., Wang, B., Wright, K., Parsons, J. T., & Frey, M. A. (2008). Brief report: Maintenance of effects of motivational enhancement therapy to improve risk behaviors and HIV-related health in a randomized controlled trial of youth living with HIV. Journal of Pediatric Psychology, 33(4), 441e445. https://doi.org/10.1093/jpepsy/jsm087. Naar-King, S., Montepiedra, G., Garvie, P., Kammerer, B., Malee, K., Sirois, P. A., Aaron, L., & Nichols, S. L.; PACTG P1042s Team. (2013). Social ecological predictors of longitudinal HIV treatment adherence in youth with perinatally acquired HIV. J Pediatr Psychol., 38(6), 664e674. https://doi.org/10.1093/jpepsy/jst017. Naar-King, S., Outlaw, A., Green-Jones, M., Wright, K., & Parsons, J. T. (2009). Motivational interviewing by peer outreach workers: A pilot randomized clinical trial to retain adolescents and young adults in HIV care. AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 21(7), 868e873. Naar-King, S., Parsons, J. T., Murphy, D. A., Chen, X., Harris, D. R., & Belzer, M. E. (2009). Improving health outcomes for youth living with the human immunodeficiency virus: A multisite randomized trial of a motivational intervention targeting multiple risk behaviors. Archives of Pediatrics and Adolescent Medicine, 163(12), 1092e1098. https:// doi.org/10.1001/archpediatrics.2009.212. Naar-King, S., & Suarez, M. (2011). Motivational interviewing with adolescents and young adults. The Guilford Press. Naar-King, S., Templin, T., Wright, K., Frey, M., Parsons, J. T., & Lam, P. (2006). Psychosocial factors and medication adherence in HIV-positive youth. AIDS Patient Care and STDs, 20(1), 44e47. Naar-King, S., Wright, K., Parsons, J., Frey, M., Templin, T., Lam, P., & Murphy, D. (2006). Healthy choices: Motivational enhancement therapy for health risk behaviors in HIVþ youth. AIDS Education and Prevention, 18(1), 1e11. Naar-King, S., Wright, K., Parsons, J. T., Frey, M., Templin, T., & Ondersma, S. (2006). Transtheoretical model and substance use in HIV-positive youth. AIDS Care, 18(7), 839e845. Naar, S., Parsons, J. T., & Stanton, B. F. (2019). Adolescent trials network for HIV-AIDS scale it up program: Protocol for a rational and overview. JMIR Res Protoc, 8(2), e11204. Norton, W. E., Amico, K. R., Cornman, D. H., Fisher, W. A., & Fisher, J. D. (2009). An agenda for advancing the science of implementation of evidence-based HIV prevention interventions. AIDS and Behavior, 13(3), 424e429. https://doi.org/10.1007/s10461-009-9556-8. Outlaw, A., Naar-King, S., Green-Jones, M., Wright, K., Condon, K., Sherry, L., & Janisse, H. (2010). Brief report: Predictors of optimal HIV appointment adherence in minority youth: A prospective study. Journal of Pediatric Psychology, 35(9), 1011e1015. Outlaw, A., Naar-King, S., Janisse, H., & Parsons, J. T. (2010). Predictors of condom use in a multisite study of high-risk youth living with HIV. AIDS Education and Prevention, 22(1), 1e14. https://doi.org/10.1521/aeap.2010.22.1.1. Outlaw, A. Y., Naar-King, S., Tanney, M., Belzer, M. E., Aagenes, A., Parsons, J. T., … Adolescent Medicine Trials Network for HIV/AIDS Interventions. (2014). The initial feasibility of a computer-based motivational intervention for adherence for youth newly recommended to start antiretroviral treatment. AIDS Care, 26(1), 130e135. https://doi.org/10.1080/ 09540121.2013.813624. Pangaea Global AIDS Foundation. (2009). Report from the expert consultation on implementation science research: A requirement for effective HIV/AIDS prevention and treatment scale-up. Cape Town, South Africa Retrieved from http://pangaeaglobal.org/news-and-events/publications/75-report-from-the-expert-consultation-on-implementation-science-research. Parsons, J. T., Halkitis, P. N., Bimbi, D., & Borkowski, T. (2000). Perceptions of the benefits and costs associated with condom use and unprotected sex among late adolescent college students. Journal of Adolescence, 23(4), 377e391. https://doi.org/10.1006/jado.2000.0326.

References

307

Parsons, J. T., Siegel, A. W., & Cousins, J. H. (1997). Late adolescent risk-taking: Effects of perceived benefits and perceived risks on behavioral intentions and behavioral change. Journal of Adolescence, 20(4), 381e392. https://doi.org/10.1006/jado.1997.0094. Pennar, A., Naar, S., Woods, S. P., Nichols, S., Outlaw, A., & Ellis, D. A. (2019). Promoting resilience through neurocognitive functioning in youth living with HIV. AIDS Care 2018, 30(4), 59e64. Prochaska, J. O., Redding, C. A., Harlow, L. L., Rossi, J. S., & Velicer, W. F. (1994). The transtheoretical model of change and HIV prevention: A review. Health Education Quarterly, 21(4), 471e486. Raymond, J. F., Bucek, A., Dolezal, C., Warne, P., Benson, S., Abrams, E. J., … Mellins, C. A. (2017). Use of unannounced telephone pill counts to measure medication adherence among adolescents and young adults living with perinatal HIV infection. Journal of Pediatric Psychology, 42(9), 1006e1015. https://doi.org/10.1093/jpepsy/jsx064. Reynolds, N. R. (2009). Cigarette smoking and HIV: More evidence for action. AIDS Education and Prevention, 21(3 Suppl), 106e121. Rongkavilit, C., Naar-King, S., Kaljee, L. M., Panthong, A., Koken, J. A., Bunupuradah, T., & Parsons, J. T. (2010). Applying the information-motivation-behavioral skills model in medication adherence among Thai youth living with HIV: A qualitative study. AIDS Patient Care and STDs, 24(12), 787e794. Rongkavilit, C., Naar-King, S., Koken, J. A., Bunupuradah, T., Chen, X., Saengcharnchai, P., … Parsons, J. T. (2014). A feasibility study of motivational interviewing for health risk behaviors among Thai youth living with HIV. The Journal of the Association of Nurses in AIDS Care: JANAC, 25(1). Rongkavilit, C., Naar-King, S., Wang, B., Panthong, A., Bunupuradah, T., Parsons, J. T., … Phanuphak, P. (2013). Motivational interviewing targeting risk behaviors for youth living with HIV in Thailand. AIDS and Behavior, 17(6), 2063e2074. Santiprabhob, J., Tanchaweng, S., Maturapat, S., Maleesatharn, A., Lermankul, W., Sricharoenchai, S., … Chokephaibulkit, K. (2017). Metabolic disorders in HIV-infected adolescents receiving protease inhibitors. BioMed Research International, 2017, 14. https:// doi.org/10.1155/2017/7481597. Schackman, B. R. (2010). Implementation science for the prevention and treatment of HIV/ AIDS. Journal of Acquired Immune Deficiency Syndromes(1999), 55(Suppl. 1), S27eS31. https://doi.org/10.1097/QAI.0b013e3181f9c1da. Shaw, S., & Amico, K. R. (2016). Antiretroviral therapy adherence enhancing interventions for adolescents and young adults 13e24 years of age: A review of the evidence base. Journal of Acquired Immune Deficiency Syndromes(1999), 72(4), 387. Simoni, J. M., Kurth, A. E., Pearson, C. R., Pantalone, D. W., Merrill, J. O., & Frick, P. A. (2006). Self-report measures of antiretroviral therapy adherence: A review with recommendations for HIV research and clinical management. AIDS and Behavior, 10(3), 227e245. Somarriba, G., Lopez-Mitnik, G., Ludwig, D. A., Neri, D., Schaefer, N., Lipshultz, S. E., … Miller, T. L. (2013). Physical fitness in children infected with the human immunodeficiency virus: Associations with highly active antiretroviral therapy. AIDS Research and Human Retroviruses, 29(1), 112e120. https://doi.org/10.1089/AID.2012.0047. Steinke, J., Root-Bowman, M., Estabrook, S., Levine, D. S., & Kantor, L. M. (2017). Meeting the needs of sexual and gender minority youth: Formative research on potential digital health interventions. Journal of Adolescent Health, 60(5), 541e548. Syed, S. S., Balluz, R. S., Kabagambe, E. K., Meyer, W. A., III, Lukas, S., Wilson, C. M., … Sleasman, J. W. (2013). Assessment of biomarkers of cardiovascular risk among HIV type 1-infected adolescents: Role of soluble vascular cell adhesion molecule as an early indicator of endothelial inflammation. AIDS Research and Human Retroviruses, 29(3), 493e500.

308

12. HIV/AIDS

Tabb, Z., Mmbaga, B., Gandhi, M., Louie, A., Kuncze, K., Shayo, A., … Dow, D. (2017). Association of self-reported adherence and antiretroviral drug concentrations in hair among youth with virologic failure in Tanzania. Open Forum Infectious Diseases, 4(Suppl. 1), S663eS664. https://doi.org/10.1093/ofid/ofx163.1770. The White House Office of National AIDS Policy. (2010). National HIV/AIDS strategy for the United States. Washington, DC: The White House Office of National AIDS Policy. Retrieved from https://www.hiv.gov/federal-response/national-hiv-aids-strategy/ documents-and-shareables#original-documents. The White House Office of National AIDS Policy. (2015). National HIV/AIDS strategy for the United States: Updated to 2020. Washington, DC: The White House Office of National AIDS Policy. Retrieved from https://www.hiv.gov/federal-response/national-hiv-aidsstrategy/overview. UNAIDS. (2014). The gap report. Retrieved from http://www.unaids.org/en/resources/ documents/2014/20140716_UNAIDS_gap_report. UNAIDS. (2015). Executive summary: How AIDS changed everything. MDG6: 15 years, 15 lessons of hope from the AIDS response. Retrieved from http://www.unaids.org/en/resources/ documents/2015/MDG6_report_executive-summary. Viswanathan, S., Justice, A. C., Alexander, G. C., Brown, T. T., Gandhi, N. R., McNicholl, I. R., … Jacobson, L. P. (2015). Adherence and HIV RNA suppression in the current era of highly active antiretroviral therapy (HAART). Journal of Acquired Immune Deficiency Syndromes(1999), 69(4), 493. Vrazo, A. C., Sullivan, D., & Ryan Phelps, B. (2018). Eliminating mother-to-child transmission of HIV by 2030: 5 strategies to ensure continued progress. Global health, science and practice, 6(2), 249e256. https://doi.org/10.9745/GHSP-D-17-00097. Webb, L., Perry-Parrish, C., Ellen, J., & Sibinga, E. (2018). Mindfulness instruction for HIVinfected youth: A randomized controlled trial. AIDS Care, 30(6), 688e695. Whiteley, L., Brown, L., Lally, M., Heck, N., & van den Berg, J. J. (2018). A mobile gaming intervention to increase adherence to antiretroviral treatment for youth living with HIV: Development guided by the information, motivation, and behavioral skills model. JMIR mHealth and uHealth, 6(4), e96. https://doi.org/10.2196/mhealth.8155. Williams, P. L., Storm, D., Montepiedra, G., Nichols, S., Kammerer, B., Sirois, P. A., … PACTG 219C Team. (2006). Predictors of adherence to antiretroviral medications in children and adolescents with HIV infection. Pediatrics, 118(6), e1745ee1757. Wong, V. J., Murray, K. R., Phelps, B. R., Vermund, S. H., & McCarraher, D. R. (2017). Adolescents, young people, and the 90e90e90 goals: A call to improve HIV testing and linkage to treatment. AIDS (London, England), 31(Suppl. 3), S191eS194. https://doi.org/ 10.1097/QAD.0000000000001539. Zanoni, B. C., & Mayer, K. H. (2014). The adolescent and young adult HIV cascade of care in the United States: Exaggerated health disparities. AIDS Patient Care and STDs, 28(3), 128e135. Zogg, J. B., Woods, S. P., Sauceda, J. A., Weibe, J. S., & Simoni, J. M. (2011). The role of prospective memory in medication adherence: A review of an emerging literature. Journal of Behavioral Medicine, 1e16.