The Impact of Youth-Friendly Structures of Care on Retention Among HIV-Infected Youth

Introduction

Increasing access to quality HIV care and improving retention in care for individuals living with HIV remain top priorities of the United States (US) National HIV/AIDS Strategy. ^1,2 However, there is growing evidence that young people living with HIV (YLHIV) fare poorly compared to older adults. YLHIV are more likely to disengage from care, delay initiation of antiretroviral therapy (ART), and have lower rates of virologic suppression on ART. ^{3 –9}

YLHIV face barriers to care that are unique to the developmental period of adolescence and young adulthood. ^10,11 Like many youth with chronic illness, YLHIV must learn to cope with a chronic medical condition at a time when most peers are healthy. With growing independence, they must learn to integrate medical care with rapidly evolving adult roles and responsibilities and also to navigate complex health systems, including the ability to access confidential health care services, often without the support or knowledge of their family, partners, or friends. ^{6,7,12 –14}

These challenges, along with others commonly faced by all people living with HIV (e.g., stigma, substance abuse, mental illness, lack of social support), likely impact the degree to which young people engage in care. ⁸ As a result, YLHIV require targeted services and structures within clinical care settings that can accommodate and support their unique developmental needs.

Youth-friendly health care is a widely used term to describe patient-centered approaches that accommodate the needs of YLHIV and may facilitate improved outcomes during the developmental transition from childhood to adulthood. ¹⁵ In 2002, the World Health Organization (WHO) developed a framework for youth-friendly health services that identified five key objectives to promote the delivery of quality health care for young people: accessibility, acceptability, appropriateness, effectiveness, and equity of care. ¹⁶ These principles provide an important framework for understanding the unique attributes of providing care for youth and are grounded in research that examine the help-seeking behaviors of youth, their barriers to access care, and the responsiveness of healthcare systems to provide quality health care for youth. ¹⁷

The Institute of Medicine subsequently utilized the WHO principles as a framework to emphasize the need to develop youth-friendly health services in order to improve the health of young people in the US; however, greater understanding about how to operationalize and measure these principles by defining the structural and service components of effective high-quality youth-friendly health care are needed. ^18,19

Poor retention in care among YLHIV is a significant barrier to timely initiation of ART and achieving viral load suppression. ^3,6 To date, there is limited information to describe approaches that may be important to retain YLHIV in care. Our study seeks to characterize the structural components of care determined a priori to be “youth-friendly” that are available in adult and pediatric clinics of the HIV Research Network (HIVRN) and assess their relationship with retention in care in order to identify potential areas of structural interventions in the clinic environment that facilitate retention among YLHIV.

Methods

Results

During the 2011 calendar year, there were 680 YLHIV who attended at least one clinic visit at an HIVRN site (Table 1). Among these youth, 512 (75%) were between 20–24 years old, 452 (67%) were male, and 477 (70%) were black. Over three-quarters of the sample were MSM (43%) and just over a third had acquired HIV perinatally or through blood transfusion (35%). Fifty percent of the cohort had CD4 counts <500 cells/mm³ and 82% were prescribed ART. The majority of YLHIV were insured (70%) and nearly half had been enrolled in care at a HIVRN clinic for less than 2 years (47%). The numbers of YLHIV attending adult (51.6%) versus pediatric (48.4%) sites were nearly even.

With regards to clinic locality, all YLHIV attended clinic sites with easy accessibility to public transportation and 65% received care at HIV clinics that were co-located in a multispecialty building rather than a stand-alone HIV clinic. Only 76 (11%) YLHIV attended a clinic with a separate waiting area for youth, all at pediatric sites. Less than half of YLHIV (48%) had waiting areas intentionally designed for young people (e.g., youth-targeted reading materials or décor). One-third (36%) of YLHIV were receiving care in clinics with evening hours, although all YLHIV in pediatric and adult clinics were able to schedule walk-in appointments for the same day. Most YLHIV were receiving care in clinics where email or text messages were utilized for patient-provider communications (87%).

The majority (58%) of YLHIV attended clinics with a less than 1-week wait time for new patient appointments and 73% were able to schedule a routine follow-up appointment within 2 weeks. Seventy-three percent of YLHIV were receiving care in clinics where providers with any type of training in adolescent health and development ranging from public health coursework, clinical rotation, or adolescent-medicine subspecialty fellowship were available.

Although a greater proportion of YLHIV attending pediatric clinics had access to several of the structures of interest, youth-friendly structures of care were not unique to pediatric clinics (Table 2). Among YLHIV enrolled in adult clinics, 74% were attending clinics co-located in multispecialty buildings compared to 54% of those attending pediatric HIV clinics; 76% were able to utilize email and text message communications with providers versus 100% in pediatric clinics; 62% had wait times of <1 week for a new patient appointment versus 52% of those in pediatric clinics; 47% had wait times of <2 weeks to a next available follow-up visits compared to all YLHIV in pediatric clinics; and 48% were attending clinics where adult providers with prior adolescent health training were available, whereas all YLHIV in pediatric clinics had providers with some adolescent health training. Waiting areas designed for youth populations were available to only 5% of YLHIV in adult clinics, compared to 93% of YLHIV in pediatric clinics.

Overall, 576 (85%) of YLHIV who had at least one clinic visit in 2011 were retained in care. Demographic and clinical characteristics by retention status are noted in Table 3, and youth-friendly care structures by retention status are noted in Table 4.

After adjusting for age, gender, race/ethnicity, HIV acquisition, CD4 category, ART use, insurance status, and duration in care, YLHIV who were receiving care in clinics with waiting areas intentionally designed for YLHIV were nearly 2.5 times more likely to be retained in care (AOR 2.47, 95% CI 1.11–5.52). Those who received care in clinics with evening hours (AOR 1.94; 95% CI 1.13–3.33), and providers with any training in adolescent health on staff (AOR 1.98; 95% CI 1.01–3.86) were nearly twice as likely to be retained in care (Table 5).

Discussion

Despite US national priorities to increase access to quality HIV care and improve retention in care for individuals living with HIV, YLHIV are faring worse along every stage of the HIV care continuum compared to their older adult counterparts. ^{8,26 –29} Prior studies have shown the strong correlation between retention and viral load suppression. ^{30 –32} With the notable disparities in outcomes and poor viral load suppression rates among youth, the importance of retaining young people in care is critical. Determining the structures of care available in HIV clinic settings that support retention in care for this challenging population can facilitate a greater number of youth to initiate ART earlier and ultimately achieve viral load suppression. Few studies to date have examined specific structural components of care that could inform the development of effective interventions targeted to YLHIV and improve retention in this population. Our study advances this field of research and identifies the availability of evening clinic hours, youth-friendly waiting areas, and the availability of providers with training in adolescent health and development as structures of care that may facilitate retention among YLHIV.

The literature concerning YLHIV concentrates heavily in pediatric and adolescent clinical environments; however, data from the HIVRN suggest that the majority of YLHIV ages 15–24 years old are attending adult HIV clinics. ³³ This is not surprising since 75% of new HIV infections occur among young adults in the 20–24 year age group. ³⁴ Although many pediatric and adolescent HIV clinics care for YLHIV up through the age of 25, YLHIV are more likely to enter care in adult care settings due to the larger numbers of adult-centered HIV clinic sites available and the transitional age of this population. Thus, broadening the scope of effective and feasible youth-targeted care practices across both adult and pediatric care settings is an important area of need.

In this study, we found that both adult and pediatric clinics in the HIVRN offered a variety of care structures that were youth-friendly. A greater proportion of YLHIV enrolled at pediatric clinics had access to many youth-friendly structures of interest compared to those enrolled at adult clinics. However, most of the youth-friendly structures we examined were available to nearly 50% or more of YLHIV receiving care at adult clinics, with the exception of youth-targeted waiting areas (separate physical space or intentional youth-targeted design) and evening clinic hours.

Studies looking at the transition of young people with special health care needs from pediatric to adult care settings have described differences in the culture and environments of pediatric and adult-oriented medicines, highlighting contrasts in the organization of care, treatment practices, and communication styles. ^35,36 Despite these differences, our findings suggest that many adult HIV clinics may already be providing components of care in their current delivery models that can be considered youth-friendly. Further work to determine the availability of other youth-friendly structures and services in adult clinical care settings may provide insight into the development of potential cost-effective structural interventions that impact outcomes among YLHIV.

YLHIV attending clinics with a waiting area intentionally designed for youth engagement (e.g., health literature, electronic media, décor) were more likely to be retained in care. In a study of 15 adolescent HIV clinics in the Adolescent Trials Network, clinical environments were identified as a potential structural barrier for young people seeking care. ^13,18 Waiting rooms of HIV clinics are important areas of the clinical setting and may shape the experiences of YLHIV with their illness and perceptions of clinical care, including potential exposure to stigmatizing comments from other patients or inadvertent disclosure of their HIV status to older adults in their communities. As a result, YLHIV may feel uncomfortable and vulnerable in a place where trust and supportive care are essential. Available spaces to provide a separate youth-friendly waiting area are often limited and were only available to 11% of the YLHIV in our sample.

We also found that access to evening clinic hours was significantly associated with retention among YLHIV. Evening and weekend clinic hours promote clinic accessibility and have been shown to decrease repeated emergency department use and hospitalizations among people living with HIV. ^37,38 Although extended clinic hours may broadly benefit people of all ages, YLHIV may especially benefit from the increased opportunities to access health services and engage in care as a historically underserved and difficult to reach population. ^19,39,40 Although extended clinic hours or other alternative scheduling of clinical staff and building operations may be limited by available resources, future directions for incorporating structural changes in clinic settings should consider offering extended clinic hours to YLHIV clients and other vulnerable populations.

The availability of providers with adolescent health training may also play a role in increasing retention in care among YLHIV. In our study, YLHIV attending clinics with providers with any adolescent health training were nearly twice as likely to be retained in care as compared to those without any adolescent health trained providers on staff. Although adolescent medicine subspecialty-trained physicians and adolescent health pediatric nurse practitioners pursue additional training to care for YLHIV with complex conditions, they comprise only a small proportion of the providers who see adolescent and young adult populations in the US. ^19,41,42 Developing a more robust adolescent health care workforce capable of responding effectively to important adolescent health issues such as mental health illness, sexual health, and to address complex psychosocial needs may be an important approach to increase engagement in care and strengthen self-efficacy around important healthy behaviors among YLHIV. ^{43 –45}

Physicians in adult primary care specialties (internal medicine and family practice) generally are not required to receive adolescent or young adult-specific training, whereas all pediatric residency programs are required to have a minimum 4-week clinical experience in adolescent medicine. ⁴⁶ Providers, including pediatricians, have reported feeling inadequately prepared to discuss sensitive adolescent health issues such as mental health illness, reproductive health, and violence. ^{47 –49} In a qualitative study of adult and pediatric HIV providers, differences in the awareness of the developmental features of adolescence and young adulthood emerged as a possible influencing factor regarding providers' approaches to care for youth. ¹² Determining the impact of provider-targeted interventions focusing on effective competencies for adolescent health care may be an important step towards improving care for YLHIV and improving retention among this population.

There were several limitations to our study. First, since this was a cross-sectional study, our findings cannot determine causality and additional longitudinal studies to examine the impact of youth-friendly care are needed. Additionally, although the study sites were located in urban areas where the HIV epidemic among YLHIV is concentrated, they were not a nationally representative sample, and our findings may not be generalizable to all pediatric or adult clinics. Third, although the availability of the youth-friendly structures of care were assessed, we were unable to determine the quality of these structures or the extent to which individual YLHIV utilized these care structures.

Standardized measures for youth-friendly care are not consistent in the literature and further work to define the properties of quality youth-friendly care and utilization of such services would greatly enhance evaluations of youth HIV clinical programs. Finally, we were not able to assess for additional patient-level psychosocial factors such as social support or stigma, as this was beyond the scope of our study.

In conclusion, defining targeted youth-friendly structures of care available in both pediatric and adult HIV clinical settings is an important approach to retain YLHIV in care. YLHIV receiving care in clinics with youth-targeted waiting areas, evening clinic hours, and providers with any adolescent health training may be more likely to be retained in care. Further work to determine specific characteristics, quality measures, and effective implementation of youth-friendly care are necessary to improve treatment outcomes in this population.