Effects of active tracking of patients lost to follow-up in an HIV programme in Benin (West Africa)
AfroAIDSinfo invited Dr. Kpangon from Benin to report on his study which determined the frequency of HIV patients who, after being lost to follow-up after HAART initiation, returned for their HIV treatment after active tracking
With large access of Highly Active Antiretroviral Therapy (HAART), many people in sub-Saharan Africa (SSA) have increased their life expectancy, particularly in settings where there is a high HIV/AIDS burden (Ware et al., 2013). The retention of People Living with HIV/AIDS (PLWHA) in HIV/AIDS programmes in sub-Saharan Africa (SSA) is important to improve life expectancy (Rosen et. al., 2011). The retention in care after testing HIV-positive (Giordano et al., 2007) and being lost to follow-up after initiation of HAART remains a challenge, even if the patients are living in high-resourced settings. We proposed to investigate active tracking of PLWHA who did not continue with treatment after HIV-positive testing or who were lost to follow-up after HAART initiation.
Patients and methods
Design and settings
This observational cross-sectional study, coupled with in-depth interviewing, was conducted between September 2011 and August 2012 in the North-east areas of Benin Republic situated in West Africa. The Academic Hospital of Borgou (AHB), a referral hospital, in this area hosted many patients who came from other towns and villages within the region.
Study participants included PLWHA who received care at the AHB between 1 September 2004 and 1 September 2011, were aged 15 years and older, and who tested positive for HIV and/or registered for receiving care at AHB.
Patients lost to follow-up, were considered those who had not attended the hospital for 8 months since their last medical consultation, and who had not renewed their HAART drugs at the AHB pharmacy.
Those on active treatment were considered PLWHA who received care at AHB and everyone who came for clinical and biological monitoring of their HIV infection every 6 months.
A multi-staged sampling approach was followed. The first stage was to collect the folder of every patient who met our definition of loss-to-follow-up. The second stage was to contact these patients and invite them, with their consent, to continue with their care at AHB.
Community health workers, who were involved in HIV/AIDS care under supervision of a physician heading the site, made contact with patients lost to follow-up. After an appointment was made with the patient lost to follow-up, the meeting was held at a place of their choice. Participants who agreed to return to care were referred to the social and welfare specialist, who is skilled in therapeutic education. Socio-demographic data were collected from each patient’s folder.
The ethics committee of the University of Parakou, affiliated to AHB, approved this study and thereafter in-depth interviews were conducted after obtaining the study participants’ written consent.
Data were collected from the 343 patients recorded as lost-to-follow-up. Of these, 222 (64.72%) were female and 121 (35.28%) were male. Patients who were on HAART, amounted to 258 (75.21%). Of these, 22 (6.41%) returned to continue with treatment (95% CI: 3.8, 9), while 30 (8.75%) (95% CI: 5.8, 11.8) were continuing their follow-up at another site. A further 30 participants self-transferred to other sites and 19 were introduced to a Prevention of Mother to Child Transmission (PMTCT) HIV programme. A further 21 (6.12%) patients lost to follow-up were confirmed as deceased by oral autopsy (95% CI: 3.6, 8.6).
A further complication showed that 267 (77.80%) patients denied their HIV status and therefore refused to continue with treatment or were not reachable by phone call or physical address (95% CI: 73.50, 81.80). Finally, community health workers were threatened with death by two patients lost to follow-up should they be contacted at home again.
The 22 patients, who returned for treatment, justified their discontinuation to the long distance they had to travel to health facilities and the high transport cost. Ten patients attributed defaulting to long waiting times, six to stigma experienced at the AHB and three to travelling to attend burial ceremonies.
The in-depth interviews, particularly among women involved in PMTCT before 2008 (year of implementation of HAART adherence programme) revealed the following: “I’m not informed enough to continue with clinical and biological follow-up at the end of PMTCT care”. A woman lost to follow-up stated that: “My husband refused me to go to hospital for HIV care, argued that this disease didn’t exist”.
The frequency rate of study participants who returned for treatment after active tracking was very low (6.4%). This low rate could be explained by the length of time taken before active tracking took place of PLWHA lost to follow-up. A major cause for this was inaccurate addresses. This observation has led to the assumption that active tracking of PLWHA lost to follow-up seems not to be the appropriate technique to reach these patients.
In our study, the frequency of patients lost to follow-up because ofdeath which was confirmed by oral autopsy (6.12%) is similar to that of patients who returned for treatment. This result contributes to the assumption that, among those lost to follow-up, there might be many who died because of other contributing causes. In many studies in SSA, the mortality among PLWHA lost to follow-up ranged between 12% and 87%. This is double to what was found in our study. An explanation could be the high frequency of almost 80% of PLWHA who could not be reached or denied their HIV status (Brinkhof et al., 2009).
The lack of timely follow-up resulted in the increased occurrence of opportunistic infections leading to death. The high frequency of women in the PMTCT programme who self-transferred must be taken into account in the treatment of PLWHA. A known fact is that PLWHA often migrate to other areas to avoid the stigma experienced at their own health facility (Weiser et al., 2003).
Comments PLWHA made during the in-depth interviews highlight that insufficient information is provided during pre- and post-counselling regarding HIV testing, which contributes to the high level of stigma and discrimination accompanied by HIV infection in SSA. The reasons given by those PLWHA who returned to treatment, are similar to those suggested in other studies (Kagee et al., 2011; Mills et al., 2007).
In this study, the low rate of returnees to treatment after active tracking of PLWHA lost to follow-up appears to not be an effective technique to reach them, especially when a long time has lapsed before HAART is initiated. The reasons evoked by those returning to care in SSA, seem to be the similar in different parts of the continent.
This highlights the urgency of a national electronic system for HIV programmes to accurately track the details of PLWHA to avoid double counting of those who quit one site and moved to another without informing the previous site. This national electronic system will also facilitate implementation of systematic research of cases lost to follow-up in order to reach them in time thereby avoiding high mortality and the emergence of HIV strains resistant to HAART drugs.
- Brinkhof, M., Pujades-Rodriguez, M., Egger, M. (2009) Mortality of patients Lost To Follow Up in Antiretroviral Treatment Programmes in Res ource-Limited-settings: Systematic Review and Meta-analysis. Plos One, 4.
- Giordano, T. P., Gifford, A. L., White, A. C., Suarez-A. M. E., Rabeneck, L., Hartman, C, et al. (2007) Retention in care: A challenge to survival with HIV infection. HIV-AIDS, 44(1):1493-9.
- Kagee, A., Remien, R. H., Berkman, A., Hoffman, L., Campos, L., Swartz, L. (2011) Structural barriers to ART adherence in southern Africa: challenges and and potential ways forward. Global Public Health, 6(1), pp. 83-97.
- Mills, E. J., Nachega, J. B., Bangsberg, D. R. (2006) Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators. Plos medicine, 3(11), article e438.
Rosen, S., Fox, M. P. (2011) Retention in HIV care between testing and treatment: systematic review. Plos medline, 8(7).
- Ware, F. C., Wyatt, M. A., Geng, E. H., Kaaya, S. F., Agbadji, O. O., Muyindike, W. R, et. al. (2013) Toward and understanding of disengagement from HIV treatment and care in sub-Saharan Africa: A qualitative study. Plos medline,10(1).
- Weiser, S., Wolfe, W., Bangsberg, D., Thior, I., Gilbert, P., Gilbert, P., Makhema, J., & et al. (2003) Barriers to Antiretroviral Adherence for Patients Living With HIV infection and AIDS in Bostwana. J Acquir Immune defic Syndr, 34, 281-8.
Janvier Sossito, Florence Akpo, Béatrice Gnonhossou, Médard Béakou, and all clinical, social staff of AHB and “Association positif 08 de Charleville-mézières (France)”
Biosketch of the first author
As a young Doctor, Amadohoué Arsène Kpangon, has worked during 5 years as a medical doctor consultant in the internal medicine section of Academic Hospital of Borgou in Benin (West Africa) focusing on HIV patients. In 2012 he graduated with a Master of Science in Infectious and tropical diseases, doubled by MPH skills he gains at the University of South Africa. His topics of research interests are co-infection HIV-TB, HIV-HVB, HAART failure, and cardiovascular comorbidities.
Guest Authors: Kpangon AA, Dovonou AA, Agossou J, Amidou SA, Penalba C, Avokpaho E, Keke R, Hounnouga MJ, Tognon TF, Zannou DM, Gandaho P.
Reviewed by: Jean Fourie (MPhil) and Michelle Moorhouse (MBBCh, DA)
Corresponding author: Kpangon A. Arsène, mail: firstname.lastname@example.org
Date: March 2014
Kpangon AA, Dovonou AA, Agossou J, Amidou SA, Penalba C, Avokpaho E, Keke R, Hounnouga MJ, Tognon TF, Zannou DM, Gandaho P. (2014) Effects of active tracking of patients lost to follow-up in an HIV programme in Benin (West Africa), AfroAIDSinfo. Issue 14 no. 3, Health Profession (Open access).
4 March, 2014