Health Science Reviews

By Jaime Altshuler

Imagine being a parent in rural Africa, watching your child’s feet swell and their face grow puffy, unaware this could be a sign of a serious kidney disease: nephrotic syndrome (NS). If left untreated, this disease can lead to life-threatening complications.

NS is one of the most common chronic kidney diseases in children globally. It causes protein loss in the urine, oedema, low blood protein, and can eventually lead to end-stage renal disease. While most children recover if diagnosed early and treated properly, the situation in Africa is far more complex.

NS affects thousands of children across Africa, but we don’t know the extent of it. Research across the continent is limited, disproportionate and often outdated, making it nearly impossible to truly understand the complete scope of the disease.

A team of researchers conducted a systematic review of 81 papers from 17 African countries. They analysed decades of data, from studies published between 1963 and 2020, focusing on how NS affects children in Africa. They looked at how NS is diagnosed, how children respond to treatment and what kidney biopsies reveal about the disease.

This study exposes a critical gap in research affecting paediatric patients with NS across Africa, and why a one-size-fits-all approach to this disease won’t work. NS presents differently across the continent. West Africa carries the highest burden, followed by North and Southern Africa, while East and Central Africa reported far fewer cases. Most children had steroid-sensitive NS (SSNS), but steroid-resistant NS (SRNS) appeared at much higher rates than in children from high-income countries. Across the continent, regional variation in trends of NS treatment was observed, with the highest proportion of SSNS seen in Central Africa and the highest percentage of SRNS seen in Northern and Southern Africa.

By the time many children are diagnosed in Africa, they are already around seven years old, which is three to four years older than reported in children of European and South Asian ancestry, meaning vital treatment time has been lost. With few nephrologists available, NS is often managed by general paediatricians and symptoms of NS are sometimes missed or mistaken for something else, like malnutrition.

Kidney biopsy findings followed similar regional patterns. Central Africa had the highest frequency of minimal change disease (MCD), while West Africa had the lowest. Focal segmental glomerulosclerosis (FSGS), a more severe form, was most common in Central Africa and least frequent in East Africa.

Interestingly, over the decades, trends have shown that fewer children are presenting with steroid resistance, likely reflecting improved access to care, fewer infections and better general health. At the same time, the biopsy data showed an increase in MCD and FSGS diagnoses and fewer other histopathological types in recent years, suggesting improved diagnostic techniques and better-trained pathologists. Still, biopsies remain underutilised in many regions due to global guidelines that assume most children have MCD and advise against the use of biopsies. While this may be appropriate in high-income settings, it risks mismanagement in African countries, where disease patterns differ significantly and can be dangerously misleading. This highlights the importance of accessible local pathology services and specialised tests, but in many regions, these remain out of reach due to high costs, limited infrastructure, and a lack of health coverage.

Secondary causes of NS, such as malaria, hepatitis B, HIV, sickle cell disease and systemic lupus erythematosus, remain more prevalent among African children than in other populations, and can greatly influence treatment choices, yet most children do not receive biopsies or specialised testing due to cost and infrastructure limitations. Without access to these tools, doctors are left to guess, and children miss out on the opportunity for tailored care and the prevention of disease progression.
If we want to give children across Africa the best chance at a healthy life, we need a better understanding of the epidemiology of NS across the African continent, as well as more local data, trained professionals, and guidelines that reflect Africa’s regional realities. With earlier diagnosis, equitable access to treatment and targeted research, childhood NS can be transformed from a life-threatening condition into a manageable one, that no longer defines a child’s future.

Reference:
Wine, R., Vasilevska-Ristovska, J., Banh, T., Knott, J., Noone, D., Gbadegesin, R., Ilori, T.O., Okafor, H.U., et al. 2021. Trends in the epidemiology of childhood nephrotic syndrome in Africa: A systematic review. Global Epidemiology. 3:100061. DOI: https://doi.org/10.1016/j.gloepi.2021.100061.