Barriers and best practices of transitioning perinatally HIV-infected adolescents to adult care in Asia-Pacific

Introduction

There are several existing guidelines for the transition of perinatally HIV-infected adolescents (PHIVA) from paediatric to adult clinics, mainly from the US and UK [1–3] and they may not be applicable in Asia. We explored barriers to and best practices for transitioning PHIVA to adult care in the Asia-Pacific region using a web-based survey of healthcare providers and reported voices from PHIVA with their comments on transitioning to adult clinics.

Web-based survey of healthcare providers

From December 2012 to January 2013, we conducted a web-based survey on transitioning to adult care among healthcare providers by sending individual emails to healthcare providers participating in the TREAT Asia HIV research network. The 10 questions in the survey were adapted from previous publications [2,3] and 38 healthcare providers completed it; 60% of whom were female. Their median (IQR) duration of experience in HIV care was 15 (10–17) years. They were from Thailand (61%), Malaysia and Vietnam (11% equally), Indonesia (5%), Cambodia, China, the Philippines and Australia (3% equally). Areas of specialisation included paediatrics (50%), internal medicine (37%) and other fields (13%; i.e. nurses, counsellors, social workers). Those responding felt that the appropriate age for transitioning to adult HIV clinics was 18 years (32%), 20 years (24%), 15 or 17 or 19 or 25 years (8% each equally), and others (12%; i.e. 13, 16, 21, 22 years). Most of the clinics (71%) had no guidelines for transitioning adolescents.

The five most commonly identified barriers to successful transition were:

• •Concerns about continuity of care between paediatric and adult services (63%);
• •Limited communication between all parties involved in the transition process (45%);
• •Limited clinic time and less focus on psychosocial needs in adult services (45%);
• •Less adolescent-friendly environments within adult HIV care settings (40%);
• •Less developed expertise within adult HIV-care settings that are specific to the psychosocial needs of adolescents with HIV (37%).

The five best practices reported for transitioning to adult services included:

• •Disclosure of HIV status prior to the transition process (66%);
• •Initiating the preparation phase 1–3 years in advance (61%);
• •Preparation of an up-to-date medical summary for new adult providers (55%);
• •Identification of adult HIV clinicians with an interest in facilitating the transition process (50%);
• •Arrangement of meetings between patient, paediatric and adult practitioners to discuss individual transitions (45%).

Voices from PHIVA on the barriers and best practices for transitioning to adult clinics

A 3-day camp for 19 Thai PHIVA aged between 17 and 22 years was conducted by a Thai activist group in January 2013. Nine of the young people had already transitioned to adult HIV care. Table 1 describes their perspectives.

Table 1.

Perspectives from perinatally HIV-infected Thai adolescents to HIV-infected peers and healthcare providers on transitioning to adult care

To HIV-infected peers: ‘What we will face in adult clinic’ •The atmosphere is different, not as easy-going. Most of the adult healthcare providers look serious with limited time to talk to us, and there is a long queue •We feel worried about who and what we will face •We must take more responsibility as it's not a one-stop service; we may need to be absent from class to receive antiretroviral therapy (ART) •Sometimes, we may get different ART formulation/dosages from what we have previously received •No one will remind us if we forget an appointment •If you have social security insurance, you will be immediately moved to an adult clinic and admission will be at an adult ward •Some adults who come to the adult clinic may ask us questions, i.e. what happened or are we HIV-positive like them ‘How we could prepare’ •Although the adult clinic's atmosphere is different, treatment is the same; we just need to be more responsible •Some adolescents like the adult clinic while others do not and need more time to adjust •Build a relationship with adult healthcare providers, and learn their rules •If an appointment time conflicts with other things, we should find a volunteer or healthcare provider to help pick up medication for us •We need to know about our own health (i.e. CD4, ART formulation, dose and side-effects) •We should prepare how to communicate with an adult doctor (i.e. what blood tests are for and what the results mean) •If we do not feel comfortable talking to adult patients who ask about our HIV status, we don't need to say anything

To paediatric healthcare providers: ‘We need your help in preparing us and we need to be able to get in touch’ •We need at least 4–6 months to prepare us before transition •For our first visits to the adult clinic, we may feel more comfortable if you come with us •Introduce us to staff and show us the location of the adult clinic to relieve our anxiety •Suggest that we remember/learn our personal health information •Help build our skills in talking to other adults who ask our HIV status •We would like to come back to the paediatric clinic to visit, as it is familiar and we miss our friends and staff there who have cared for us since we were young •Taking medication inaccurately already causes us stress. Please don't threaten us with the adult clinic if we don't take our medication accurately

To adult healthcare providers: ‘We need an opportunity to learn’ •We are learning to take responsibility for ourselves. Please don't criticise us and say that we are spoiled from the paediatric clinic. We have enough anxiety coming to the adult clinic •If there are activities arranged for young people, it can help us learn to be more responsible for ourselves •Please have staff available to ask if we have problems •If we have class or work, please let us postpone appointments without difficulty •If medication can be distributed in the clinic area, it will be more convenient •Please consider an adolescent clinic (for young people aged 18–25 years), so that we can adjust more easily and get to know one another •We do not want to see adult healthcare providers’ stress or tension. When healthcare providers are stressed, people who come to the clinic will also be stressed

In conclusion, insufficient continuity of care between the paediatric and adult HIV care teams and variations in the quality of care received by PHIVA in adult clinics were considered key barriers in the transition process. Development of transition guidelines suitable for other Asian countries is urgently needed and post-transition outcomes should be evaluated.