Abstract
Background
Despite the success of prevention of mother-to-child transmission programs, transition to care in the postpartum period is vulnerable to being lost to care.
Methods
The authors performed a 2-year retrospective study of postpartum HIV-infected patients at Komfo Anokye Teaching Hospital in Kumasi, Ghana. The outcome was classified as optimal follow-up, suboptimal follow-up, and loss to follow-up (LTFU). Univariate and multivariate analyses were used to identify factors associated with optimal retention.
Results
Follow-up was optimal in 66%, suboptimal in 16%, and LTFU in 18% of patients. The rate of LTFU was 22% among women diagnosed at pregnancy and 13% among those with known HIV diagnosis (P = .078). Adherence counseling (odds ratio [OR] 5.0, confidence interval [CI] 1.6-15.7; P = .006) and family planning (FP; OR 2.3, CI 1.0-5.3; P = .041) were predictive of optimal follow-up.
Conclusion
At 1 year, only two-thirds of postpartum women remained in care. Investigating barriers to adherence counseling and FP may impact engagement in care among HIV-infected women.
Keywords: retention, postpartum, linkage to care, adherence
Background
Access and adherence to antiretroviral therapy (ART) has been shown to markedly improve morbidity and mortality and decrease HIV transmission globally.1-3 In sub-Saharan Africa, an area where women are significantly impacted by the AIDS epidemic, the challenges of maintaining women in HIV care are limited access to care compounded by the competing responsibilities of work and child care. Significant resources are directed toward reducing vertical transmission in this region and globally through prevention of mother-to-child transmission (PMTCT) programs. The PMTCT program successes are evident by increased testing rates, increased antiretroviral coverage during pregnancy, and decreased HIV infection rates among children worldwide.4-7 However, there is growing evidence that women may be less likely to engage in care during the postpartum period.8-9
Particularly in resource-limited settings (RLS), consistent engagement beyond the delivery and immediate postpartum is of utmost importance for preventing further transmission through breast-feeding as well as subsequent pregnancies. In most of these RLS, lifelong ART is not yet possible for all pregnant and postpartum HIV-infected women. This is due to cost of drugs, lack of infrastructure, and the decentralized care in many of these nations. Thus, regular follow-up in care is necessary to monitor for progression of disease and need for ART. However, this vulnerable population has been shown to have higher rates of loss to follow-up (LTFU).9-13 We have a gap in knowledge of identifying the scope of this problem as well as understanding primary reasons why these women fall out of care. The barriers to consistent engagement are specific to the local setting of the individual, given the social, cultural, economical, and structural issues that differ from region to region. Without consistent engagement, health risks increase for many including the individual woman, her partner, and her children.
Globally, HIV/AIDS is the leading cause of death among females aged 15 to 49. Close to 80% of all females living with HIV/AIDS are in sub-Saharan Africa, and in this region there are more females living with HIV than men.14 Although the national prevalence for Ghana is estimated to be 1.37% in 2012, higher prevalence exists among certain regions, for example, 3.5% for Accra region and 2.6% for Ashanti region. For women seeking antenatal care, the prevalence is estimated to be 2.1% nationally.15 Because of the epidemic among women of reproductive age, there is great concern of newly acquired cases through mother-to-child transmission and highlights the importance of consistent engagement in care for these women.
This study represents the first step in formulating the degree and predictors of LTFU among postpartum HIV-infected women in Kumasi, Ghana, in the Ashanti region. In this retrospective study, we sought to identify the LTFU rates and optimal retention rates among this population in the early postpartum period as well as the factors that increased retention rates. The results from this study will serve as the basis for future in-depth work and intervention development to improve on retention among HIV-infected postpartum females.
Methods
We performed a retrospective chart review of postpartum patients referred to Komfo Anokye Teaching Hospital (KATH) HIV clinic between January 1, 2010, and December 31, 2011. The KATH is a tertiary referral center in Kumasi, Ghana, that serves as the referral center for 6 of the 10 regions of Ghana. It is the second largest teaching hospital in Ghana and provides clinical care for over 5000 patients, 50% of whom are on ART. The KATH averages 100 to 150 deliveries from HIV-infected women annually. The KATH clinic maintains a record of patients as they are referred to the clinic, including those referred from the antenatal clinic. We used this to identify our study population for our study years of 2010 to 2011. Data were abstracted from the individual medical charts on age, occupation, education level, CD4 count, time of HIV diagnosis, ART initiation, adherence counseling, disclosure, marital status, and method of family planning (FP). All data through July 31, 2012, were reviewed. HIV visit data were collected and patients were classified as:
Optimal retention involves completing at least 1 medical visit every 6 months after delivery.
Suboptimal retention involves completing 1 medical visit every 12 months.
LTFU involves no HIV medical visits within 12 months.
Our definition for optimal retention to be 1 visit every 6 months is justified in 2 ways: first, the standard of care for HIV-infected patients at KATH (whether on ART or not) involves visits every 6 months. For those who are on ART, they return monthly for medication pickup, apart from their biannual visits. Second, this is in accordance with the Human Resources and Services Administration HIV/AIDS Bureau (HRSA HAB) definition for retention to care defined as 2 or more visits separated by at least 3 months in a 1-year period.16
Analysis
Descriptive summary analyses were performed on the individual demographic and clinical variables of our study population. The characteristics of the women with optimal retention were compared with those of nonoptimal retention (less than 2 visits in 1 year) using the chi-square test. Univariate and multivariate logistic regression analyses were used to identify factors associated with optimal retention. Covariates with P < .10 in the univariate analysis were included in the multivariate model. All covariates in the multivariate model with P < .05 were considered significant.
Ethics Approval
This project was approved by the institutional review board at the Rhode Island Hospital, Lifespan in Providence, Rhode Island, and the Committee on Human Research, Publications, and Ethics at Kwame Nkrumah University of Science and Technology, School of Medical Sciences and Komfo Anokye Teaching Hospital in Kumasi, Ghana.
Results
There were 207 HIV-infected females referred to the adult HIV clinic at KATH from the antenatal clinic (ANC) during the study period of 2010 to 2011. Of the 207 individuals, 141 (68%) medical charts were available. We had no medical records for the remaining 32% for which we do not know the exact reason: transferred care, never engaged, or death are all possibilities. Baseline characteristics for these 141 are summarized in Table 1. The mean age was 31 years, and 75% were married or cohabiting. Regarding education, 18 reported no schooling, 15 only completed primary school, 62 (51%) had some secondary school, and 26 reported college or technical school. The majority of women (85%) reported some form of employment, with trading (small retail business) being the most common occupation. In terms of children, 89 women had 2 or more children living, with 17 having more than 3 children.
Table 1.
Demographics | |
---|---|
Age, years, mean (SD) | 31 (4.84) |
Marital status | |
Married/cohabiting | 100 (75) |
Divorced/separated | 7 (5) |
Single | 14 (11) |
Widow | 12 (9) |
Education, n (%) | |
Primary | 33 (27) |
Secondary | 62 (51) |
At least some college or higher | 26 (22) |
Employment, n (%) | |
Currently working outside the home | 116 (85) |
Not working | 20 (15) |
Number of children (living), n (%) | |
1 child | 36 (29) |
2-3 children | 72 (57) |
>3 children | 17 (14) |
Disclosure status, n (%) | |
Yes | 132 (94) |
No | 9 (6) |
HIV diagnosis history | |
At this pregnancy | 79 (56) |
1-3 years | 19 (13) |
3-5 years | 22 (16) |
>5 years | 21 (15) |
CD4 count (during pregnancy), n (%) | Mean 518 |
Less than 200 | 12 |
201-350 | 27 |
More than 350 | 95 |
Attended Mothers Support Group, n (%) | |
Yes | 56 (40) |
No | 85 (60) |
Adherence counseling, n (%) | |
Completed (total of 3 sessions) | 125 (88) |
Did not complete | 16 (12) |
Family planning, n (%) | |
Yes | 50 (35) |
No | 91 (65) |
Retention results, n (%) | |
Optimal follow-up (1 visit/6 months) | 93 (66) |
Suboptimal follow-up (1 visit/12 months) | 23 (16) |
Loss to follow-up (no visit in 12 mo) | 25 (17) |
Abbreviations: SD, standard deviation.
More than half (56%) of our study population were diagnosed with HIV at the pregnancy reviewed for the study. The mean CD4 count was 518 cells/mm3. Overall, 93% had disclosed their HIV status to family or friends. The majority of women (89%) completed adherence counseling (at least 3 visits), but only 35% reported their mode of FP. Also, 56 (40%) of 141 women attended at least one of the mothers’ support group meetings for HIV-positive women.
Our outcome variable of interest was optimal retention. Overall, 66% of females had optimal follow-up, 16% were classified as suboptimal, and 18% of the women were LTFU. The rate of LTFU among women newly diagnosed with HIV during the pregnancy included in this study was 22% compared to 13% for those with prior known HIV diagnosis (P = .078; Figure 1). Optimal retention was 70% in those women who completed 3 sessions of adherence counseling, compared to only 30% of those who did not complete all 3 counseling sessions. Women who endorsed an FP method had 80% optimal follow-up. Multivariate analysis showed that adherence counseling (OR 5.0, CI 1.6-15.7; P = .006) and FP (OR 2.3, CI 1.0-5.3; P = .041) were predictive of optimal follow-up (Table 2). Of those who attended support group, 68% had optimal follow-up and 12% were LTFU. Comparatively, of those who did not attend, 65% had optimal follow-up and 20% LTFU, though this was not statistically significant (P = .7)
Table 2.
Adherence counseling | P = .006 | OR 5.0 (CI 1.6-15.7) |
Family planning | P = .043 | OR 2.3 (CI 1.0-5.3) |
Abbreviations: CI, confidence interval; OR, odds ratio.
Discussion
Postpartum women have been identified as an at risk population for falling out of care in several HIV retention studies in sub-Saharan Africa.9-11 However, in this region where women are disproportionately affected by the epidemic, very few studies exist looking at this specific population alone in an effort to identify predictive factors of retention or LTFU. Our review of the follow-up outcomes among HIV-infected postpartum women in Ghana supports the prior studies of the risk they face with only two-thirds of women having optimal follow-up and also identifies adherence counseling and FP as predictors of optimal follow-up.
Our outcome of interest was retention or consistent engagement in care. Of those women who were known to be successfully linked to HIV care in the postpartum period, only 66% had optimal retention, defined as 1 visit every 6 months. The remaining females were either LTFU or had suboptimal retention. Our findings are consistent with a study in South Africa where Kaplan et al9 examined mortality and LTFU among 2131 HIV-infected ART-naive females. They found a higher LTFU among pregnant females compared to their nonpregnant counterparts. At 3 years of treatment, there was a 32% LTFU rate compared to 13% among pregnant versus nonpregnant.9 When looking further at our study population, those women who were diagnosed with HIV pregnancy during the study had an LTFU rate of 22% compared to 13% among those with prior diagnosis. This higher LTFU rate in the postpartum period among newly diagnosed women is seen in other areas of this region. In a prospective study in Tanzania, 244 pregnant women who were diagnosed with HIV were followed up to 4 months postpartum to assess the transition to care in the postpartum period. Although 82% were referred to HIV clinic, only 45% actually made it to a visit at the clinic.12 The LTFU rate in this study was significantly higher compared to our study and the South African one mentioned earlier. However, the limitation of this study is the short follow-up of only 4 months, where maybe some returned at 6 months, which would decrease the LTFU rate. Also, this study cannot infer any assumptions on engagement or retention due to its short time frame, whereas our study followed for at least the first year, allowing for a more complete assessment of the postpartum period.
We also found in our study a significant gap in the linkage to postpartum care for a high percentage of women. A third of HIV-infected pregnant women who were referred to the KATH clinic in the postpartum period were not to our knowledge successfully linked to care (Figure 2). For that 32%, we have no evidence that they ever registered at the clinic through medical records or registration books. Although we do not know the outcome of these women (transferred care, LTFU, and death), this suggests that the transition of care following delivery needs to be strengthened with more resources and emphasis to improve this linkage during this vulnerable time.
Although studies, including ours, show that retention rates are low among postpartum HIV-infected women in this region, the reasons for this are not fully understood. There are few studies in the literature that try to answer what the barriers to consistent engagement are for these postpartum women. The added responsibility of child care, need for employment, fear of disclosure, and abandonment have been proposed as contributing factors.17-21 Yet in our study, we did not find these to be predictive factors of optimal retention. For example, 63% of women in our study population reported 2 or more children at home; however, this was not a predictor of optimal retention. In our multivariate regression model, the only factors that were predictive of optimal retention were adherence counseling and FP.
Adherence counseling is an important aspect of HIV care among all populations, particularly among women in PMTCT programs, given the risk of transmission to child if not compliant. Duff et al13 explored this in Uganda with a qualitative study assessing the barriers to care among HIV-infected women who were enrolled in the PMTCT-plus program at Kaborele Regional Hospital, where a quarter of HIV-infected women were LTFU. Interviews were conducted among 45 women who had never began ARTs (19), defaulted on ARTs (14), or were still taking ARTs (12). Specifically, they found that women who did not receive counseling on ARTs but only a pamphlet were less likely to engage. Our own study results found similar outcomes among those who received adherence counseling at multiple sessions and those who did not. Of those women who completed 3 adherence sessions, 70% had optimal retention. At KATH, HIV-infected pregnant women undergo adherence counseling in both individual and small group settings during the prenatal period. This is followed in the postpartum period by additional adherence counseling in the KATH clinic if ARTs are continued by the World Health Organization (WHO) clinical criteria. The protocol for starting patients on ARTs at KATH requires 3 separate individual adherence counseling sessions with either a nurse or a disease preventionist. The relationship between adherence counseling and optimal retention may be more of an association rather than a causal relationship. Those women who completed these sessions showed engagement in care by being physically present for additional visits and may already be more vested in their care compared to their counterparts. Thus, it is unclear whether committing more resources to adherence counseling would lead to more consistent engagement in care. The other concern regarding adherence counseling as a predictor is that it does not apply to those women who are not ART eligible following the breast-feeding period. In our study, only 67 of the 141 met WHO criteria for remaining on ART therapy. The other women may not have seen a need for follow-up, since they did not require medications. Committing more resources to increasing the knowledge of HIV and its progression among these women may be a factor that could improve their retention in care, although this needs to be studied further.
Second, we found that women who reported a form of FP (barrier protection, pills, hormonal implant, and injectables) were more likely to have optimal retention. At discharge from the ANC clinic at 6 weeks postpartum, women are asked whether they have a method for FP, and this is documented in the referral to the KATH clinic. If they answer no, they are counseled on options and this question is again asked at their entry visit to the clinic. This again suggests that these women have an investment/engagement in their own health which then carries over into their HIV care. Currently, no literature is available on comparing retention rates among women and use of FP in RLS.
The benefits of preventing unintended pregnancies through FP are obvious in reducing new pediatric HIV infections as well as pregnancy-related morbidity and mortality among HIV-infected women.22,23 Yet, the uptake and/or availability in this particular region remains low with an estimated 14 million unintended pregnancies per year in sub-Saharan Africa.24,25 Increasing the availability is important, but understanding the mind-set of these women toward FP is key. Akelo et al26 conducted an analysis of attitudes toward FP among HIV-infected pregnant women in Kenya enrolled in a clinical trial. Of 522 women, 87% reported that they intended to use FP in the future, although 59% of them reported their current pregnancy to be unintended. When looking at predictors of FP use, 2 important factors were discussion of methods with partner/spouse and the approval of using FP by their partner. This may explain part of the reason why uptake is so low in this region, particularly in situations where the woman has not disclosed her HIV status to her partner. However, in our study, over 90% of women had disclosed their status, but yet only 35% were reported to be using some method of FP. We did not have documentation of who they had disclosed to, so although the 93% disclosure status is quite high, disclosure to their partner may not have occurred therefore explaining why they were not using FP. Disclosure is encouraged by the staff at KATH so that women have a support system outside the clinic, drawing from the social structure of community in Ghana and not individualism. An additional support system can help to encourage women to stay in care and adherent to medication; however, disclosure status was not a significant factor in our outcome of retention.
Our study had several limitations. The study was a retrospective analysis relying on the data that were recorded for medical care and available. Due to missing charts, we were only able to collect data on two-thirds of the women who delivered during our study time period. The reasons for the missing charts are unclear: possibilities include seeking care at another site, registering under different names, death of the mother, relocation, or LTFU. Because we cannot identify the reasons, we cannot infer that all of these women with missing records are LTFU. Additional limitations include documentation as majority of health records are completed by nurses, public health worker, or disease preventionists rather than the physician, and there was variability in the level of detail. This precluded us from looking at further variables such as WHO stage, comorbid conditions, and so on.
There remains limited data on retention to care of postpartum HIV-infected women and what factors contribute. The importance of consistent engagement is significant to the individual patient as well as child, potential future children, and her partner. As shown in our study, the risk of falling out of care in the first 2 years is high. Ideally, the care provided through PMTCT, including medications and counseling, needs to be continued beyond pregnancy without a change in management. The 2013 WHO PMTCT guidelines of lifelong ART therapy for all pregnant women through Option B+, even in resource limited settings, is a way to accomplish this.27 Instead of intermittent ART therapy during their reproductive lives, they remain on treatment without interruption. The success of this has been shown in Malawi where after implementing this program countrywide, they were able to have retention rates among these pregnant women equal to the general population of 75% at 12 months.28 Following the success in Malawi, Option B+ is now being implemented nationally by 4 other countries (Uganda, Ethiopia, Lesotho, and Tanzania) and has been adopted by 18 of the 22 Global Priority countries.29 To date, Ghana has adopted Option B with a country-wide scale-up plan in place for Option B+ by the end of 2015.30 Even with a streamlined treatment protocol, success is only possible if women remain engaged and retained in care. More research needs to be done looking at what are the barriers to care for mothers and what are the facilitators of retention for this important population.
Acknowledgments
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the National Institute for Drug Abuse (T32DA13911), the National Institute of Mental Health (A.I.R K23MH100955), The Brown Initiative in HIV and AIDS Clinical Research for Disadvantaged Communities (R25MH083620) and the Lifespan/Tufts/Brown Center for AIDS Research (P30AI042853).
Footnotes
Authors’ Note
The views expressed in this article are those of the author(s) alone and not of either affiliated institutions or funder.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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