Main article: Audit of high infant mortality in Durban hospitals illustrates delivery gap remaining for PMTCT and paediatric ART programmes

by Theo Smart

The South African PMTCT and paediatric ART programmes are failing to reach many children at risk of HIV according to an audit of paediatric deaths in Durban’s four regional hospitals presented by Dr Videsh Naidoo of King Edward VIII Hospital at the 3^rd South African AIDS Conference in Durban last week.

Most of the deaths in the Durban hospitals were attributed to HIV — which should not be unexpected given the high antenatal HIV prevalence in the region. And yet, for roughly three quarters of the children’s deaths, there was no information in the hospital records to indicate whether they or their mothers have been provided PMTCT services. Furthermore, only a small minority (of the children or mothers) received ART — despite clear evidence of advanced HIV disease.

 “This serves as a reality check on the state of healthcare for our children,” said Dr Naidoo. “A radical and innovative strategy is needed to improve the access of children and their parents, which is very important, to both PMTCT and HAART programmes.”

While some presentations at the meeting suggested that there is indeed a low rate of coverage for the PMTCT programme,  this  could be the result of poor data collection and reporting practices. Nevertheless, this could impact the quality of support and follow-up provided for HIV-exposed children and their parents. In the end, it could be the poor integration of PMTCT, ART, antenatal and postnatal care that resulted in many of these deaths.

The city at the epicentre of AIDS

Durban is the largest city in KwaZulu Natal (KZN), the South African province with the highest antenatal HIV prevalence, around 37.2% according to one recent surveillance study (Rollins, AIDS 2007).

More than a quarter of Durban’s population, around 900,000 out of 3.2 million people, are under the age of 15. Given the high prevalence of HIV, it is likely that many of these children are either HIV-infected or HIV-impacted  — since even when there is not HIV transmission, maternal mortality rates due to HIV are very high. In fact, “HIV/AIDS accounts for more than 50% of the non-obstetric causes of maternal deaths,” said Professor Nigel Rollins of the University of KZN during one of the conference plenary sessions.

As a result, infant and child mortality has also been on the increase both in the province and country as a whole since the epidemic began.

“We have high and rising level of under 5 mortality and morbidity,” Dr Donna Jacobs-Jokhan said during a session on PMTCT. Dr. Jacobs-Jokhan is the medical director of University Research Co., which directs quality assurance for the PMTCT programme in five South African provinces. “In South Africa, 65% of the all paediatric [hospital] admissions are thought to be HIV-related,” she said. And according to UNICEF estimates, without HIV/AIDS, the under 5-child mortality between 2002-2005 in South Africa would probably have around 43 per 1000 births, but because of HIV, it is now about 74 per 1000 births.

The contribution of HIV to mortality is greater in KZN. “In 2005, it was shown that HIV accounts for 21.5% of the childhood deaths in the Western Cape and 50.1% of the childhood deaths in KZN,” said Dr Jacobs-Jokhan.

To try to address this crisis, the single-dose nevirapine (sdNVP) PMTCT programme was piloted in some clinics in 2001 and then rapidly scaled up across the country. And over the last few years, paediatric ART programmes have also been established — especially at the major hospitals that provide specialist paediatric and obstetric care.

Durban has four: King Edward VIII Hospital, Mahatma Gandhi Memorial Hospital, RK Khan Memorial Hospital, and Prince Mshyeni Memorial Hospital. Each have established PMTCT and paediatric ART programmes, with 1691 children (approximately 17.6% of those qualifying for treatment) on ART at these facilities as of March 2007.

But the achievement of scaling up these programmes could obscure the treatment gap that yet remains.

The audit

Dr Naidoo and colleagues performed an audit of the child mortality at the four Durban hospitals to see to what extent  children that died had had access to PMTCT services including the provision of sdNVP, whether they had at least started the process towards receiving ART for their own treatment — as well as whether their parents’ health had been assessed and provision was made for ART.

A retrospective chart analysis was performed collating data for all the paediatric deaths at the four hospitals from January 1^st, 2006 onwards.  A project called the “Child Healthcare Problem Identification Programme”(CHIP) was also introduced into each hospital, which included a standardised mortality audit form.

The resulting data were compiled and analysed for correlations between infant/child deaths and gender, age ranges, weight and nutritional status, who was their primary caregiver, the well being of either parent, the child’s HIV status (based upon test result and or clinical staging), provision of ART (for both mother and child), provision of cotrimoxazole prophylaxis and reported participation in the PMTCT programme. In addition, the analysis included an assessment on the documentation available for the children.

Results

A total of 875 deaths from 2006 and early 2007 were analysed, representing over 90% of the paediatric deaths from three of the hospitals (complete data are not yet included from the fourth site, and the period reviewed is not yet consistent across the four sites). 53% of the deaths were in male children, 47% female.

63% of the deaths were among infants (up to one year of age). But despite the fact that these deaths occurred well after the establishment of the PMTCT programme, 72% of the patient records contained no information as to whether PMTCT services had been provided. Among the quarter whose mothers did access the PMTCT programme, 24% of the mothers had tested negative, while 33% receive sdNVP prophylaxis. 43% did not.

HIV test results were available for 57% of the children. Of these, 52% had tested positive, 10% negative, and another 38% were HIV-exposed (had maternal antibodies to HIV but were not HIV PCR positive at the time of testing).

52% of the children who passed away had not been clinically staged. “Please note that clinical staging is the quickest and easiest way to determine an entry into ARV therapy, it can be done in the first 10 minutes that you see a child,” said Dr Naidoo. But he said that after reviewing the cases with the doctors, it became apparent that about 30% of these cases were clinically symptomatic for HIV — and thus should have been staged.

Overall, 63% of all the deaths analysed were clinically symptomatic for HIV. Of the 419 children who were staged, 91% were categorised as having advanced HIV (WHO stage 3 or 4 disease). 60% of all the deaths were classified as being underweight (at least below the 3^rd centile). More than half of these even had kwashiorkor or marasmus — severe malnutrition that has become extremely rare in middle-income countries without an AIDS epidemic.

“But despite the overwhelming clinical stigmata of advanced HIV disease, 60% [of 595 children] who were assessed for the need for ART were not on the medication at the time of their deaths,” said Dr Naidoo.

In addition, information on the wellbeing of parents was available for less than half of the mothers, and only 75% of the fathers.

“Whilst mothers are the predominant caregivers, assessment of their wellbeing remains poor, with 60% of those mothers assessed for HAART not yet accessing it. Father’s are largely being ignored,” said Dr Naidoo.

“Despite the overwhelming burden posed by the HIV pandemic, documentation of the first vital steps for access to intervention strategy (PMTCT and HAART) remains very poor… The assessment of the deaths at the four major hospitals in Durban confirms what we all know, the relatively high burden of disease, but despite the established PMTCT and ART programmes, the majority of children dying in Durban’s regional hospitals at this time appear not to be accessing these interventions... In many ways, this represents the failure of the system,” he concluded.

Other studies also suggest either poor HIV programme coverage or poor data collection

While it may not be entirely fair to judge the overall effectiveness of the PMTCT and paediatric ART programmes by the failures (infant deaths), the study does illustrate the likely outcome when the programmes fall short of their mark. And this is not the first study to suggest that there is a significant gap between real and expected performance for these programmes. At the World AIDS Conference last year, http://www.aidsmap.com/en/news/74A5B372-0FAF-4EB1-8825-F84DDAB7D367.asp>Prof. Rollins and colleagues reported that despite the PMTCT programme, HIV surveillance data gathered at immunisation clinics in KZN found that 20.8% of HIV-exposed infants had become HIV-infected. Based upon data from clinical trials, transmission rates should have been much lower (around 11.9%), if every woman with HIV had been identified and every HIV-positive pregnant women and exposed child had been given antiretroviral prophylaxis.

Other reports at the conference suggested that, nationwide, the coverage of the PMTCT programme is shockingly low — only around 15-17% according to Department of Health data. But there was some controversy surrounding whether these figures are correct, or at least current.

“When we heard those figures, those of us working in the PMTCT programme sat up thinking, ‘that can’t be right.’ I think that this is largely a data collection problem that needs to be addressed at the facility level,” said Dr Jacobs-Jokhan.

In fact, she presented data from the quality assurance project (QAP) at 106 supported facilities in five provinces (in the Eastern Cape, KZN, Limpopo, Mpumalanga and the Northwest Province) showing that HIV testing uptake had improved from 55% in the first quarter of 2006 to 71% in the first quarter of 2007 for all first antenatals. Likewise, sdNVP prophylaxis uptake among mothers and/or infants testing positive also improved dramatically over this period — to 100% for the live births whose mothers had a HIV-positive result (but somewhat lower uptake among  the mothers themselves during delivery). However, taking into account the mothers who did not accept an HIV-test, the actual sdNVP prophylaxis uptake among infants at risk was 80% and 74% in the mothers.

Likewise, Dr Dhayendre Moodley of the Nelson Mandela School of Medicine said that among those mothers who test positive in a KZN survey at QAP supported sites, uptake of antiretroviral prophylaxis was now rather high, with around 83% for mothers and 95.4% for their infants according to a KZN survey. However, she noted that participation in the PMTCT programme had been poorly reported in the registers.

Getting to the bottom of whether the DOH PMTCT uptake figures are accurate or whether these QAP figures on uptake are closer (at least the baselines) to what is seen in the rest of the country could have important implications for the complexity and quality of the interventions offered to pregnant women. For instance, there are more effective prophylaxis regimens than sdNVP (including adding AZT during pregnancy, or possibly the addition of an AZT/3TC tail to decrease the chance of nevirapine resistance developing). Previously, the emphasis has been on improving the coverage of the programme rather than tweaking the intervention offered, and yet, the QAP figures of coverage and uptake are so high, that it suggests that the programme is ready to do more, or at least soon could be with the introduction of quality improvement.

Indeed, the QAP-supported PMTCT sites already promote a complete package of other services to promote holistic care for all pregnant women, including offering STI and TB and OI screening and management.

Improving integration of services

To truly improve child survival, Prof. Rollins stressed that there needs to be better integration of PMTCT, ART and maternal and child health services across the continuum of care — starting with testing and prevention services.

Receipt of PMTCT services is of course dependent upon the mother’s choice to participate in the programme, including, first and foremost, her willingness to be tested for HIV. Refusal to consent to the HIV test remains one of the biggest hurdles for sdNVP uptake.

More has to be done to encourage women to learn their status, said Prof Rollins, and to take advantage of the opportunity that antenatal testing offers. According to another study presented at the meeting, offering mothers an HIV test again (in the labour wards postpartum), could provide a last chance to deliver sdNVP to her infant — and this offer was accepted by about 60% of women (Theron).

Prevention services among those women who test HIV-negative during pregnancy also need to be improved. In Dr Rollin’s study, the rates of mother to child transmission were extremely high among women who reported that they were uninfected (which indicates they may have seroconverted after antenatal screening).

However, PMTCT is not limited to the administration of sdNVP — the use of ART among those who have low CD4 cell counts can have an even greater impact upon transmission rates. Dr Jacobs-Jokhan stressed the QAP programme encourages clinical staging and CD4 testing of women who test positive, and referral of those who qualify for ART. But experience in other settings suggests that there can be difficulty integrating ART and PMTCT programmes in practice — which means that few of these women indeed start on ART in time. Notably, only 5 out of 535 pregnant women included in the KZN survey were actually on ART at the time of delivery — when surely more of them must have qualified for ART.

Women who have CD4 cell counts less than 200 “represent about 12-15% of all HIV-infected pregnant women,” said Prof Rollins, “but they account for 40-50% of all mother to child transmissions.” Furthermore, if the mother dies of HIV, all of her children are three to four times more likely to die — so getting mothers onto treatment is essential.

And PMTCT cannot stop at delivery. After childbirth, providing counselling and support on infant feeding choices and proper follow-up for both the child and its mother are extremely important.

“We need to bridge that gap between antenatal care and postnatal services,” said Prof Rollins. Improved documentation of participation in PMTCT (starting with integrating mother and child health cards) could be crucial for continuity of care or to enabling mothers and children to get into care again.

But poor record keeping could effectively derail the programmes good intentions to provide improved support, follow-up and continuity of care for both child and parents —especially when they go to larger hospitals such as those Dr Naidoo described. Inadequate documentation could also have been one of the contributing factors for why so few of the children in the Durban hospital audit were able to access ART in time before they died.

It is not absolutely clear from Dr Naidoo’s study that the poor documentation was the fault of the antenatal clinic/PMTCT side (although this might be inferred from both the QAP presentations and the low reported DOH figures for PMTCT coverage in the country) or whether the child’s history was poorly transferred when he or she was admitted to the hospital.

“Regardless, the patient’s notes are the working document that the management is based on, and failure to record or transfer information from the Road to Health Card [child health card] to the patient notes is a failure to perform a proper clinical examination and assessment of every child,” said Dr Naidoo. However, he stressed that the complete absence of any information about the child’s receipt of PMTCT services, “was the audit’s most striking finding of all.”

At the very least, the audit shows that some children are falling through the cracks when PMTCT, maternal and child health services and the ART programme are not adequately coordinated — and that integration may be easier said than done.

According to Prof Rollins, if PMTCT targets are to be met, integrated services will need to be planned and managed.

“We need to think about prioritisation and the dedication of resources. Integration has been the new mantra for the last several years but we don’t know how to integrate. We don’t need just a framework, we need detailed implementation plans on how to put it together at the district level,” he said.

But he stressed that improved mother and child health should be the endpoint for these programmes, not just delivery of sdNVP prophylaxis (or whatever the particular prophylactic regimen being used). “Survival, and not just the avoidance of transmission should be our paradigm for the future,” he concluded.

References

Naidoo V et al. Under 5 mortality in Durban hospitals reflect failure of access to prevention of mother to child transmission and paediatric antiretroviral treatment programmes in 2007. Third South African AIDS Conference, Durban, abstract 872, 2007.

Moodley, Dhayendre et al. NVP adminstration and stock management in KwaZulu-funded by CD. Third South African AIDS Conference, Durban, abstract 722, 2007.

Theron G et al. A randomised trial of intrapartum versus postpartum rapid HIV testing in the Western Cape, South  Africa (P1031A). Third South African AIDS Conference, Durban, abstract 340, 2007.

Jacobs-Jokhan D et al. The role of quality improvement in the South African PMTCT programme. Third South African AIDS Conference, Durban, abstract 704, 2007.

Rollins N. Eliminating HIV and AIDS in infants and young children: Can an integrated approach to maternal and child survival make it a reality? Third South African AIDS Conference, Durban, 2007.

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(Making sex work safe, French adaptation)

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• understanding HIV prevention in the context of sex work
• young people and sex work
• political frameworks
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• strategies for an enabling environment
• health and safety in the workplace
• mobility and drug use         

A PDF and hard copies are available at: http://www.aidsalliance.org/sw44004.asp

Each section begins by providing essential information comprising key definitions, concepts and messages after which participatory activities are presented for carrying out with NGO/CBO staff.

The resource is intended for use by NGOs and trainers who support such groups and has been designed to be used flexibly, either in capacity building workshops or during technical support visits.

An English PDF and hard copies are available at: http://www.aidsalliance.org/sw37361.asp

An adaptation of this manual is also avail be as a PDF in Spanish.

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To address this, the Government of Zambia has a comprehensive strategy for sexual and reproductive health and HIV education for young people in and out of school.

This series of three books for Grades 4-9 contributes to the strategy by providing clear and factual information about puberty, friendship, gender, sexuality, pregnancy, sexually transmitted infections, HIV and AIDS and drug use.

The books contain many learning activities and illustrations, which engage young people in understanding themselves and their world. They reflect on and practice the virtues and skills needed to develop caring and loving relationships, make good decisions, solve problems and seek help.

The topics and activities are designed to fit into the national curriculum or to be used in extra curricula activities in or out of school. The books are accompanied by a Teachers’ Guide.

Only PDFs of these books are available from the Alliance (which can be downloaded from this page). Printed copies are being distributed to schools in Chipata, Zambia.

Books two and three in this series will be available in March 2007.

A PDF of the first book is available at: http://www.aidsalliance.org/sw44407.asp

Community engagement for antiretroviral treatment – Trainers’ manual

Participatory tools and activities for civil society organisations working with people with HIV

The number of people accessing antiretroviral treatment (ART) is rapidly expanding in many countries. There is increasing recognition of the importance of community-focused support for ART uptake and adherence in collaboration with formal health services. NGOs and CBOs therefore need appropriate training on ART and how it affects communities and people with HIV.

This manual is an Alliance response to these needs. It is designed for participatory training on comprehensive support for ART, targeted primarily at NGO and CBO staff and volunteers. It aims to inform and prepare them for meaningful and increased involvement in uptake, delivery and support of HIV testing, prevention and ARV treatment programmes. It is designed to assist in training facilitators who work directly with communities affected by HIV/AIDS. It is also a useful resource for health care staff who train community carers or health workers and for national and international organisations or consultants providing technical support to CBOs and NGOs.

The manual uses non-technical language, enabling trainees to use their knowledge to inform and support others in their communities. It is divided into thematic modules containing practical training activities, essential information and advice for trainers. The modules cover topics such as:

• preparing for ARV treatment
• supporting treatment adherence
• prevention for HIV positive people
• stigma and ARV treatment
• treatment for children
• the role of CBOs and NGOs in supporting people on ARV treatment.

PDFs and hard copies of this manual are available in English and French.

Unheard voices, hidden lives - Stories from the frontiers of the HIV epidemic

In many societies sex work and sex between men are the subject of strong disapproval and legal and social taboos. Their association with HIV and AIDS compounds existing stigma and reinforces discrimination and human rights violations.

This often means that the lives and experiences of men who have sex with men, sex workers and people living with HIV are shrouded in silence and invisibility. This makes it harder for communities affected by HIV to claim their rights, and for others to understand their experiences and needs.

Unheard Voices, Hidden Lives is one step towards changing that. This book is the result of a participatory photo project which involved representatives from community-based organisations of men who have sex with men, sex workers and people living with HIV from the International HIV/AIDS Alliance’s Frontiers Prevention Project in India, Ecuador and Cambodia.

Participants met at workshops where they were given cameras and photographic training. With their new equipment and knowledge they were asked to photograph their lives and those of their communities.

The result is Unheard Voices, Hidden Lives. In their own words and images the individuals in this book invite us into their lives to share their experiences, hopes and fears. This gives voice and visibility to communities at the frontiers of the AIDS pandemic that are all too often unheard and hidden.

The participatory photo project was implemented with the assistance of PhotoVoice

PDFs of this book are available at: http://www.aidsalliance.org/sw41295.asp

HIV/AIDS information booklets for the Caribbean

The Alliance has produced a series of four booklets to support the ongoing implementation of its HIV prevention programme in the Caribbean – focusing on behaviour change and prevention of HIV for those populations most at risk. The booklets are being distributed across the five islands where the regional programme currently has a presence (Trinidad and Tobago, Antigua, Barbados, St Kitt's & Nevis and St Vincent & the Grenadines).

The series comprises of the following four booklets:

It's my life: a guide for men about HIV and AIDS explains HIV and AIDS to men in the context of the Caribbean. In clear text and dialogue boxes it explains how HIV is passed on, how they can protect themselves and what happens if they are HIV positive. It also includes a list of organisations and institutions offering help and support in the Caribbean.

It's my life: a guide for women about HIV and AIDS explains HIV and AIDS to women, how it is passed on and how they can protect themselves; basic facts about pregnancy and prevention of HIV transmission to the baby; and what happens if they are HIV positive. It also includes a list of organisations offering help and support in the Caribbean.

Living positively: a guide about HIV and AIDS is designed to help those who know they are living with HIV and AIDS and are looking for information to help them understand their condition. The booklet covers issues such as telling others you have HIV, support from family and friends, depression, nutrition, starting combination therapy, sticking with your combination therapy and tips as well as a list of organisations offering help and support.

Understanding HIV and sexually transmitted infections explains what HIV and AIDS is, how it is transmitted, what an HIV test is, how HIV affects the body, how to live with HIV, as well as other sexually transmitted infections and where to get help and support.

PDFs of the booklets are available at: http://www.aidsalliance.org/sw40207.asp

Sexual and reproductive health & HIV and AIDS – A flip book

This flip book was produced to help outreach workers and other health educators within Alliance programmes in the states of Manipur, Punjab, Delhi, Tamil Nadu, Andhra Pradesh and Orissa, India to enable discussion about reproductive and sexual health and HIV with women’s groups, support groups and self-help groups. It will also be useful for other civil society organisations undertaking similar work.

Access to correct information, health education, knowledge and skills are essential for behaviour change to prevent HIV and other sexually transmitted infections, and to improve the sexual and reproductive health of women. 

The book covers: 

• menstruation and reproductive maturity
• pregnancy and safe motherhood
• family planning and birth spacing
• reproductive tract and sexually transmitted infections HIV and AIDS

Pictures within the book are designed to be shared with the group and are accompanied by key messages and points for discussion.

PDFs of the flip book are available in English, Hindi, Manipuri, Punjabi, Tamil and Telugu at: http://www.aidsalliance.org/sw42041.asp

General note about Alliance publications:

Alliance publications are available free of charge to NGOs and other non-profit organisations. Please check the Alliance website for the latest publications at: http://www.aidsalliance.org/sw5479.asp

You can also keep up to date with Alliance publications and news by signing up to the Loop e-bulletin: http://www.aidsalliance.org/custom_asp/form-login.asp