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11 July 2022 | Story Andre Damons | Photo Supplied
Prof Stephan Brown
Prof Stephan Brown is a Principal Specialist and Head of the Division of Paediatric Cardiology in the Department of Paediatrics and Child Health in the Faculty of Health Sciences at the University of the Free State (UFS).

Paediatric heart specialists at the Universitas Academic Hospital and the University of the Free State (UFS) hope their research into the deadly Cyanotic Heart Disease amongst newborns will assist health authorities in central South Africa to restructure healthcare services and do better health-planning to save more lives.

Prof Stephen Brown, Principal Specialist and Head of the Division of Paediatric Cardiology in the Department of Paediatrics and Child Health in the Faculty of Health Sciences at the UFS, says children from poor and rural areas in central South Africa are dying of Cyanotic Heart Disease. One of the main contributors to these deaths is the distance patients have to travel to regional hospitals. 

The research was done under the auspices of the Robert W M Frater Cardiovascular Research Centre in the department of cardiothoracic surgery in the UFS School of Medicine. The results are still in the preliminary stage as the final data is still being analysed. The Robert W M Frater Cardiovascular Research Centre (the Frater Centre) was established in 2015 under the leadership of Prof. Francis E Smit. This was made possible through donor funding, especially by Dr Robert W M Frater MD PhD (honoris causa, UFS), a South Africa-born New York-based cardiothoracic surgeon, researcher and innovator as infrastructure and project support by the UFS.

The vision of the Frater Centre is to be a leading cardiovascular research institution in South Africa and sub-Saharan Africa. It provides an interdisciplinary training and research platform for scientists and clinicians from different backgrounds to develop as researchers and collaborators in cardiovascular and thoracic surgery and related domains. Activities are focused on the development of African solutions for African problems.

According to Prof Brown, who is also a paediatric cardiologist at the Universitas Hospital, children with this disease present with a blueish colour because the oxygenated and desaturated blood mixes, leading to the blue discoloration. Prof Brown and his master’s degree researcher (Marius van Jaarsveld) focused on single ventricle physiologies; children who effectively have a single pumping chamber which means one of the chambers is underdeveloped or not developed at all. A normal person has two pumping chambers.  

“With this study we looked over 20 years of cases. Over this period we saw 154 children. It is a retrospective study because we are fortunate to have a very extensive database dating back to 1987. One thing of concern is that we should have seen a lot more children if you look at the worldwide statistics,” says Prof Brown.

Treatment 

According to him, 40 of these children never received any form of therapy for the simple reason that a lot of them presented too late while others had severe birth asphyxia when they got to the hospital. 

Treatment for Cyanotic Heart Disease usually involves up to three operations before the children become pink again. “The first operation is called palliation to ensure we control the lung blood. That is usually in the first to two to six weeks after birth. The second operation is done between six months to a year of age when we do to what we call a bidirectional Glen – second-stage palliation. Also to improve general condition and take some of the volume off the heart. The last operation, called the Fontan operation, happens between six to seven years of age and that’s when they become pink,” explains Prof Brown.

Prof Brown says the results from the study compare favorably with the rest of South Africa and Africa but do not compare that well to high-income countries because they have more resources available. 

They have seen children from Northern Cape, North West, some parts of the Eastern Cape and Lesotho. According to Prof Brown, once they looked closer, they discovered that the closer the patients are to the hospital, the sooner they present to hospital. The further away they are, the longer it takes them to present at a hospital with congenital cardiac facilities. 

“In Mangaung we saw the kids when they were around about four days old. At Thabo Mofutsanyana district in Qwaqwa we saw them three to four days after birth. So they presented early. Lejweleputswa and Xhariep districts we saw the patients after they were one month old. In densely populated areas it is picked up early, as they are closer to the referral hospitals. The further, away from a hospital, the longer it takes to get to us. In Lesotho it takes up to six months [for them to get to us] and the Northern Cape up to two months of age,” explains Prof Brown.

This is most likely an indication that distance from the hospitals plays a major role in deaths. 

How will the study help? 

Though a part of the study is for epidemiological information, Prof Brown hopes that the health authorities will take stock of the findings. “These studies are important to make health authorities aware of the challenges and to assist in health planning. What can we do better for the people? We are doing clinical research. This is important because we are a mid- to low-income country with limited resources and it is important for the population we are dealing with.”
“Our prime aim is if one knows what is going on in your population you can restructure your health care accordingly. That is our ultimate aim. Get it published and talk to the authorities. Now we can scientifically prove instead of relying on perception.”

The solution

Prof Brown says this disease can potentially be prevented by doing foetal heart sonar scans. If there is a huge screening project, a large number of deaths can potentially be prevented. Maternal screening is very important. Early referrals are also a step in the right direction. “Our parents, caregivers, and nurses need to be educated. Another solution is to do a simple saturation screening monitor prior to discharge after birth. I have been advocating for this for years and hopefully, before I retire, it will become routine procedure. Obviously there will be a lot of false positives, but we can help our people by earlier recognition of cyanosis.”

• Prof Brown, who is passionate about the health of children, says a life-saving collaboration initiative between the UFS, the Mother and Child Academic Hospital (MACAH) Foundation, and the Discovery Fund started five years ago to help curb the death of young patients due to congenital heart disease, and to make services more accessible to rural communities. With this outreach initiative, Prof Brown travels to rural areas in the Free State to diagnose heart defects in babies early. 

News Archive

Higher than expected prevalence of dementia in South African urban black population
2010-09-22

 Prof. Malan Heyns and Mr Rikus van der Poel

Pilot research done by University of the Free State (UFS) indicates that the prevalence of dementia, of which Alzheimer’s disease is only one of the causes, is considerably higher than initially estimated. Clinical tests are now underway to confirm these preliminary findings.

To date it has been incorrectly assumed that dementia is less prevalent among urban black communities. This assumption is strongly disputed by the findings of the current study, which indicates a preliminary prevalence rate of approximately 6% for adults aged 65 years and older in this population group. Previous estimates for Southern Africa have been set at around 2,1%.

The research by the Unit for Professional Training and Services in the Behavioural Sciences (UNIBS) at the UFS and Alzheimer’s South Africa is part of the International 10/66 Dementia Research Group’s (10/66 DRG) initiative to establish the prevalence of dementia worldwide.

Mr Rikus van der Poel, coordinator of the local study, and Prof. Malan Heyns, Principal Investigator, say worldwide 66% of people with dementia live in low and middle income countries. It is expected that it will rise to more than 70% by 2040, and the socio-economic impact of dementia will increase accordingly within this period. 21 September marks World Alzheimer’s Day, and this year the focus is on the global economic impact of dementia. Currently, the world wide cost of dementia exceeds 1% of the total global GDP. If the global cost associated with dementia care was a company, it would be larger than Exxon-Mobil or Wal-Mart.

The researchers also say that of great concern is the fact that South Africa’s public healthcare system is essentially geared toward addressing primary healthcare needs, such as HIV/Aids and tuberculosis. The adult prevalence rate of HIV was 18,1% in 2007. According to UNAIDS figures more than 5,7 million people in South Africa are living with HIV/Aids, with an estimated annual mortality of 300 000. In many instances the deceased are young parents, with the result that the burden of childcare falls back on the elderly, and in many cases elderly grandparents suffering from dementia are left without children to take care of them. “These are but a few reasons that highlight the need for advocacy and awareness regarding dementia and care giving in a growing and increasingly urbanized population,” they say.

Low and middle income countries often lack epidemiological data to provide representative estimates of the regional prevalence of dementia. In general, epidemiological studies are challenging and expensive, especially in multi-cultural environments where the application of research protocols relies heavily on accurate language translations and successfully negotiated community access. Despite these challenges, the local researchers are keen to support advocacy and have joined the international effort to establish the prevalence of dementia through the 10/66 DRG.

The 10/66 DRG is a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. 10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.

Since its inception in 1998, the 10/66 DRG has conducted population based surveys in 14 catchment areas in ten low and middle income countries, with a specific focus on the prevalence and impact of dementia. South Africa is one of seven LAMICs (low and medium income countries) where new studies have been conducted recently, the others being Puerto Rico, Peru, Mexico, Argentina, China and India.

Mr Van der Poel says participating researchers endeavour to conduct cross-sectional, comprehensive, one-phase surveys of all residents aged 65 and older within a geographically defined area. All centres share the same core minimum dataset with cross-culturally validated assessments (dementia diagnosis and subtypes, mental disorders, physical health, anthropometry, demographics, extensive non-communicable risk factor questionnaires, disability/functioning, health service utilization and caregiver strain).

The local pilot study, funded by Alzheimer’s South Africa, was rolled out through an existing community partnership, the Mangaung University of the Free State Community Partnership Programme (MUCPP).

According to Mr Van der Poel and Prof. Heyns, valuable insights have been gained into the myriad factors at play in establishing an epidemiological research project. The local community has responded positively and the pilot phase in and of itself has managed to promote awareness of the condition. The study has also managed to identify traditional and culture-specific views of dementia and dementia care. In addition, existing community-based networks are being strengthened, since part of the protocol will include the training and development of family caregivers within the local community in Mangaung.

“Like most developing economies, the South African population will experience continued urbanization during the next two decades, along with increased life expectancy. Community-based and residential care facilities for dementia are few and far between and government spending will in all probability continue to address the high demands associated with primary healthcare needs. These are only some of the reasons why epidemiological and related research is an important tool for assisting lobbyists, advocates and policymakers in promoting better care for those affected by dementia.”

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za  
21 September 2010

 

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