Outcomes of HIV-infected & HIV-exposed children who become LTFU

1. Outcomes of HIV-infected & HIV-exposed children who become LTFU P. Braitstein, J. Songok, R. Vreeman,K. Wools-Kaloustian, P. Koskei, L. Walusuna, S. Ayaya, W. Nyandiko, C. Yiannoutsos. JAIDSMarch 9 epub ahead of print

2. Objective • To describe the outcomes of a random sample of children who became lost to follow-up from our HIV care and treatment program in western Kenya • Ultimate aim: to revise mortality estimates among HIV-infected children and revise transmission rates among HIV-exposed children

3. Methods: Inclusion criteria • We identified all children who at their last visit were: • known to be HIV-positive, HIV-exposed, or whose HIV-status was missing in the database • were attending the clinic at the central AMPATH centre located at the urban Moi Teaching and Referral Hospital (MTRH) in Eldoret, or the rural sub-District Hospital in Burnt Forest, and • who were documented as LTFU during September and October, 2009.

4. Methods: Definition of LTFU • HIV-positive and last known to be receiving cART: absent from clinic for >6 mths; • HIV-positive child not on cART at last visit: absent from clinic for >12 mths; • HIV-exposed child absent from clinic for >6 mths; • HIV-status missing: absent from clinic for >6 months.

5. Methods: Sampling • We randomly sampled 30% of the eligible population, stratified by clinic and HIV-status.

6. Methods: Search Strategy • Trained Community Health Workers were employed to track down 2-4 children each using the outreach locator information as the starting point. • All travel costs were reimbursed and an honorarium was offered per child traced, whether dead or alive. • To confirm the location of a child, the CHWs were to provide documentation from a community leader attesting to the whereabouts or death of a child • “Detective Work”

7. Methods: Data collection • Standardized data collection form to be used in the field. • Supplemented with written narratives from the CHW’s. • To identify the primary reason for becoming LTFU, 3 independent reviewers evaluated all documentation available to make a determination as to the primary underlying cause.

8. Results • 308 children met the inclusion criteria • 254 from the urban clinic and 54 from the rural clinic • 97 children were randomly selected • 78 from the urban clinic and 19 from the rural clinic • We were able to locate 82% of children: • 19/19 (100%) of children from the rural clinic • 61/78 (78%) from the urban clinic. • Children were located in an average of 5 attempts, including telephone calls and home visits. • The majority of children were located in the first 3 months.

10. Limitations • We sampled from children LTFU more recently, so not able to extend our interpretation to children who have been LTFU for a greater length of time; • AMPATH is decentralized throughout western Kenya, so the outcomes of children who have become LTFU may be quite different from those in single-centre programs; • Although we obtained a random sample and the sample was reflective of the sampling frame on most indicators, our sampled HIV-positive children were proportionately less likely to have been receiving cART at their last visit.

11. Conclusions • We were able to locate a majority of this sample of children lost from our HIV care program in western Kenya. • Mortality estimates among HIV-positive children may need revising given these data. • Transmission estimates among HIV-exposed children need to take into account outcomes among the LTFU. • Children have unique vulnerabilities because of their dependency on their parents or other caregivers.

12. Factors Underlying Taking a Child to HIV Care: Implications for Reducing Loss to Follow-up among HIV-Infected and Exposed Children J Wachira, SE Middlestadt, R Vreeman, P Braitstein.Journal of the Social and Cultural Aspects of HIV/AIDS (SAHARA Journal). In press.

13. Approximately 10% of children in the Sub-Saharan region are identified as loss to follow-up ( LTFU) within the first year of treatment . Higher rates (19.2%) are reported during the second year. In western Kenya, LTFU among children has been documented at 18.4 per 100 child-years (cy) with higher (20.1/100 cy) rates among HIV exposed children compared to HIV infected children (15.2 cy pre and 14.1 cy post-cART initiation). With no appropriate intervention, the adverse outcomes of inconsistent HIV treatment and care are expected. Introduction

14. Caregivers have the primary responsibility of ensuring that children are adherent to medication and maintain their clinic appointments. A number of studies have explored factors associated with LTFU in children. However, few studies have examined this from the perspective of the caregivers responsible for taking these highly vulnerable children to care. Given the implications for children’s health and well being, it is critical that we understand the factors associated with taking HIV infected and exposed children to care, as perceived by the caregivers. Justification

15. We sought to qualitatively : 1) Understand the personal and socio-cultural factors associated with caregivers not taking their HIV infected and exposed children to care. 2) Recommend effective strategies to improve clinic attendance of these highly vulnerable children. Study Objectives

16. Study Design: Exploratory qualitative study conducted between June and August 2010. The Study Framework: Social ecological model (intrapersonal, interpersonal, community and health facility levels were explored) Study Sites: Moi Teaching and Referral Hospital (MTRH)-AMPATH and Burnt Forest AMPATH. Methodology

17. Target population: caregivers with HIV infected and exposed children documented as LTFU between September and October, 2009. Drawn from the Pedi-Up sample Caregivers whose children were still alive and provided reasons why the child in question had not returned to clinic that included disclosure, fear of discrimination, belief that child was HIV negative, instructions from the doctor, use of traditional medicine or faith healing. LTFU Definition: Being absent from clinic for >6 months if child was HIV infected and on combined antiretroviral therapy (cART) and >12 months for HIV exposed children and those not on cART. Methodology

18. Sampling: Purposive sampling targeting 31 caregivers. A total of 26 caregivers agreed to be interviewed, 2 had relocated and 3 were not willing to be interviewed. Data collection: Tape recorded in-depth interviews. Data Analysis: Interviews were transcribed and content analyzed. Methodology

19. Caregivers included those caring for HIV infected (7), HIV-exposed (17) and HIV-unknown status (2) children. All were women with a majority (77%) being biological parents. The decision about routinely taking children to HIV care involved multiple levels of factors. Results

20. Financial constraints: Transport costs, food availability, time constraints due to work commitments: ‘I leave for the farm at 7.00 am and I come back home at around 5pm, and yet the clinic is open from 8am to 4pm. Therefore I don’t get time to go to the clinic. I want to go but I don’t have the time to take the children to the clinic…. I have to look for odd jobs, such as ploughing or washing clothes for people so that I can get some money for food and transport.’ Disclosure of HIV status for both mother and child: ‘I realize that my sister used to go to the clinic but I did not know about it. I only came to know about it when the community health worker informed me that she used to go to Burnt Forest clinic for HIV treatment with her child... I also did not know since we didn’t live in the same household.’ Results: Intrapersonal Level

21. Perception that child is healthy: ‘When the mother realized the child was fine (healthy), she stopped attending clinic…She also stopped taking the child to clinic. She did not see the need.’ Religious beliefs: ‘We stopped taking the child to the clinic when we started going to church…You know when a person is prayed for they get healed…they told us to stop taking the medicines. One cannot take medication and still go to church. The pastor told us to stop going for treatment and I just stopped taking the child to the clinic; all of us just stopped going.’ Results: Intrapersonal Level

22. Unsupportive male partner: ‘At times he leaves me here with the children. He goes for 4 months or 3 months and comes once in a while. I have to struggle to get a packet of flour, and when I don’t get anything we just stay without food…..…..… He says that he is not infected, that every time he gets tested he is HIV negative. He says I will infect him and wonders where I got the disease. Because of this he says I should fend for myself, survive on my own…’ Stigma by the family: ‘I was discriminated by my parents! I was a burden! My mother, brothers and sisters did not want me at home. They felt I was a burden since I was HIV, did not even have a job and had children …So I was forced to leave home.’ Family conflicts: ‘Sometimes we argue and fight to a point that I get stressed and lose appetite…They talk ill of me… I almost feel like giving up, or even poisoning both my sick children and I so that we die and leave behind the healthy children with my family…It would even be better if I stopped living at home.’ Results: Interpersonal Level

23. Cultural norms: Women left with all child caring responsibilities Changing community dynamics: ‘Nowadays everyone is on their own because there is no money. It is not like back then when people assisted one another. People nowadays mind their own business and so do I. I guess I am on my own and do not seek help from my community.’ Perceived stigma: ‘When you tell people about your status, they will announce everywhere. I am from the village and not like in town where everyone minds their own business. In the village when people sit, all they do is talk about you.’ Results: Community Level

24. Distance to health facility: ‘It takes eheh! 5 hours…I go on foot because there are no vehicles...When I have to go to clinic I leave the house at 5am, with the child on my back; we arrive there at around 10am. In essence the problem is lack of food and transportation. I was relieved when the doctor told me to stop taking the child to clinic.’ Lack of patient-centered care: Doctor patient communication: ‘I stopped taking my child for care when they told me that the child does not have it (HIV)…I don’t think I was told why. I was just told that the child doesn’t have the disease, and was advised to stop breastfeeding… You know, the doctor is the one who decides because he is the one who knows best.’ Health provider-patient relationship: ‘Some health personnel would tell me, “You don’t see the importance of coming to hospital and that is why you are doing this (delaying)?”…Others would say, “Or did you feel your child got healed so you decided to stay back? Did someone tell you that you are healed?”….So such things offended me.’ Results: Health Facility Level

25. Inappropriate Referrals: ‘We were transferred to Khunyangu clinic but we did not go…When I called my initial clinic-MTRH they told me that I had to go to Khunyangu clinic and bring back my medical files to MTRH clinic ….they sent me away every time and insisted that I go to Khunyangu clinic for treatment and ask them to transfer the files back [to MTRH], in order to continue with treatment. … so I stayed back for a while, since I had never been to Khunyangu and I didn’t even know where it was.’ Different appointment schedules (mother and child). ‘…the problem is when I have to take one child to the clinic today and take the other one the next day. I will then be given different appointment dates which make it challenging because of transport costs.’ Results: Health Facility Level

26. Factors associated with caregivers taking their children for HIV care (or not) in the context of LTFU are nested within the intrapersonal, interpersonal, community and healthcare systems. The complex interrelationship between these components suggests a holistic approach is needed to address the challenges faced by caregivers in taking their children for their HIV clinical appointments. Conclusions

27. Patient-centered approach to HIV pediatric care integrated within a family centered approach to promote male involvement and other family members who are a strong support system. The health care systems should aim at embracing the different cultural and religious beliefs in identifying effective strategies to support caregivers sustain adherence to care for their children. Although community support was not appreciated, continuous HIV campaigns are needed to address stigma and discrimination that present major barriers to care. Recommendations

28. Acknowledgements • Community Health Workers at MTRH and Burnt Forest • Pamela Koskei and Leahbell Walusuna • Moi University School of Medicine • Moi Teaching and Referral Hospital • IeDEA-East Africa Consortium • Clinicians and clinical staff • Data managers, assistant data managers, and data technicians Moi Teaching and Referral Hospital