Prevalence, Barriers and Facilitators of Age Appropriate Transition From Paediatric to Adult Care Among Hiv Infected Adolescents/youth at Kenyatta National Hospital

Abstract

Background: Rates of Human Immuno-Deficiency Virus infection among adolescents and youth in Kenya continues to rise and due to wide access to life saving anti-retroviral therapy there has been an improvement in survival rates, resulting in more adolescents and youth who must eventually transition from pediatric to adult HIV health care services. HIV-infected adolescents and youth must learn to figure out on how to explore a complex health regime, the society stigma and discrimination associated with HIV. It is important that this process go smoothly to guarantee congruity of care and maximize patient outcomes. Objectives: The study aim was to determine the proportion, and identify barriers and facilitators to age appropriate transition of HIV infected adolescents/youth from pediatric to adult HIV services during follow-up at the Comprehensive HIV care services at Kenyatta National Hospital. Study Design: This was a cross sectional study employing both quantitative and qualitative methods. Methods: HIV infected adolescents/youth between the ages of 15 -24 years in long term care at KNH CCC were enrolled after consent was obtained using consecutive sampling over a period of four months on clinic days. Adolescents/youth were interviewed using standardized questionnaire and relevant clinical data was abstracted from their medical records. Different variables were analyzed using a SPSS version 23 and quantitative data was summarized into frequencies, proportions and measures of central tendency and a p-value of < 0.05 was considered significant. Focused group discussions were conducted among HIV infected adolescents/youth to gain insight into their perceived facilitators and barriers to transition. In depth, key informant interviews were conducted among health care workers using an open-ended interview guide. Qualitative data were transcribed verbatim and analyzed which were then reported in form of themes and quotes. Results: We enrolled 96 HIV infected adolescents/youth who were of median age of 18yrs, IQR (15-24yrs), had been in follow up for median period of 7yrs IQR [0.6 – 17yrs]. Fifty-six (58.3%) were females, 23 (24%) were full orphans, 57 (59%) had vertically transmitted the infection and the median age of disclosure was 13yrs, IQR (9 – 23yrs). Their most recent median CD4 count was 460 IQR [ 1.1 – 1307], 83 (86%) were currently of WHO clinical stage I/II and current ARV regimen NNRTI based were 41 (43%) and PI based were 56 (58%). xi Overall 48 (50%) of the 96 adolescents/youth age between 15 -24 years had transitioned to adult care services. Three (6%) transitioned before 18yrs of age (early transition), 11 (23%) at appropriate age of 18 -20yrs and 34 (71%) had delayed or late transition between 21 – 24yrs. Most adolescents/youth described feeling not prepared for transition and felt anxious and worried amid the transition process. The youth demonstrated that the change was overpowering, and used expresions like: ―being scared,‖ ―a shock,‖ and ―don‘t know what to expect‖ to describe first hearing about transition. Every key informants (health care workers) concurred that transition to adult care was an vital issue that was expanding in urgency as HIV infected adolescents/youth advanced towards the age of 19yrs. Key barriers to transition to adult care were: fear of letting go of the bond and relationship that the adolescents/youth and health care providers have formed over the years, stigma and discrimination by the adults attending the adult clinic, difference in care between pediatric and adult clinics and poor preparedness on transitioning. Facilitators that were identified were: being independent and having sense of responsibility, early preparation to transition, transitioning as a group and having a supportive system from caregivers and HCW‘s. Conclusion and Recommendations: Nearly a quarter of adolescents/youth successfully transition to adult HIV services at an appropriate age and majority transition late. Early transition is rare in our setting. Significant barriers remain including stigma, difficulty letting go, and abrupt transfer. The major facilitators to transition include: support by peers, HCW‘s and caregivers as well as empowering the adolescent/youth to take ownership over their care and early preparation to transition. Transitioning successfully, adolescents and youth with HIV to adult clinic settings depends on having continuous and sufficient dialogue amongst pediatric and adult HIV care teams, readiness of patients and their families through particular transition plans, have an incorporated and stepwise approach and robust support structures that address stigma and numerous other difficulties to growing-up with HIV.