Guidelines fail to address needs of adolescents living with HIV transitioning to adult health care in low- and middle-income countries

Only five of 12 low- and middle-income countries had transition guidelines, according to a systemic review of adolescents living with HIV transitioning from paediatric to adult health care published in AIDS and Behavior.

The authors believe this to be the first review to survey the literature on barriers and facilitators of transition for adolescents living with HIV in low- and middle-income countries and to compare these factors to countries’ current guidelines.

Background

The scale-up and the effectiveness of antiretroviral therapy have dramatically improved life expectancy for people living with HIV. However, while the death rate has declined among adults and children, it has remained constant among adolescents. Mortality in this age group is closely linked to poor retention in care and inadequate antiretroviral adherence.

Transition from paediatric to adult care involves the adolescent taking on a more independent role in his or her health care. It is a critical process during which adolescents living with HIV are at high risk of poor outcomes.

Transition coincides with a dynamic period of adolescent development, involving physical, cognitive and psychological changes when identities are formed and autonomy established. However, traumatic events (such as the loss of parents and disclosure to partners and friends) and physical and mental distress can stop or change this process.

While published guidelines suggest a healthcare transition process, they are based primarily on studies in high-income countries and may be inappropriate in resource-poor settings.

The review

Studies were included in the review if they focused on adolescents living with HIV aged between 10 and 21 having transitioned; had original data on barriers and facilitators to transitioning; and were published in a peer-reviewed journal.

Seven qualitative and three quantitative studies were identified, with data from 790 adolescents living with HIV and 134 healthcare providers, clinic staff and expert clients.

Five studies were conducted in sub-Saharan Africa (Uganda, Botswana, Tanzania, Kenya, Rwanda, South Africa and Swaziland) with the remainder in Asia (Thailand and Cambodia) and Latin America (Brazil and Dominican Republic).

Barriers

Six studies identified barriers (factors perceived to reduce the likelihood that adolescents would engage with care or adhere immediately before, during or after transitioning). Four themes emerged: emotional and interpersonal burden, effects of HIV disease, logistical and systemic impediments, and HIV stigma.

Studies described the emotional and interpersonal burden of moving from familiar and supportive paediatric care to the unfamiliar and independent adult care setting. Adolescents were reluctant to leave their long-term paediatric providers with whom they had developed strong emotional attachments. Paediatric healthcare workers also reported emotional distress associated with transitioning long-term patients to adult care.

A South African study suggested that cognitive delays due to the effects of HIV disease could affect adolescents’ ability to learn the necessary self-management skills. At the same time, adult providers may lack the necessary skills to address these issues.

Adolescents often struggled with the size and complexity of adult clinic settings. Counselling or support groups provided to pediatric patients at no cost were either unavailable or costly.

Adolescents often felt judged by adult patients. Young people in the Dominican Republic reported fear of involuntary disclosure and a lack of familiarity with, and trust in, clinic staff.

Communication critical to facilitate transition

All ten studies identified facilitators of successful transition. Five themes emerged: social support, skills development for adolescents living with HIV and the adult treatment team, readiness for transition, multidisciplinary treatment teams, and transition co-ordination.

The perception of social support was the most frequently identified facilitator of success. Peer support groups were linked to improved treatment adherence, making friends and potential romantic partners, shared understanding and greater resilience.

As adolescents approach transition, a continuous dialogue between the adolescent, paediatric and adult providers, and caregivers is needed so that adolescents and their caregivers are:

• active agents in decision-making about transition
• aware of how care may change; and
• able to meet with the transition team to address concerns before and after transition.

The most promising transition programmes included multidisciplinary clinic models (integration of key services including mental health treatment, sexual/reproductive health, family planning, dental care and pharmaceutical services), peer support groups, training for adult providers and financial support programmes.

Programmes should actively encourage early discussions about the process, be patient-centred and be flexible in delaying the transition until the adolescent has developed the necessary skills to manage their care, the authors say.

Guidelines fail to address needs

Only five of 12 countries (Uganda, Kenya, Thailand, Brazil and Cambodia) had transition-specific guidelines or addressed the issue within national HIV guidelines.

Most countries with transition guidelines advocated for communication between providers and adolescents; peer support; multidisciplinary care teams; and the assessment of adolescents’ disease self-management skills.

Few addressed the role of caregivers, retention in care, monitoring medication adherence, or the training needs of adult providers. Only one guideline addressed HIV-related stigma.

None addressed specific funding for transition programmes, nor did any include targets or monitoring mechanisms to assess existing or future programmes.

While several countries have guidelines, there is limited data on which interventions are effective.

Recommendations

The authors recommend surveillance systems to monitor and evaluate how adolescents’ needs are addressed during transition; country-specific guidelines for transition that address the facilitators and barriers identified in their review; the involvement of caregivers; and training adult treatment teams.