Emory University

Lessons from the eHealth Africa-Emory University Schistosomiasis Study

By Tolulope Oginni and Emerald Awa-Agwu

Schistosomiasis and nineteen other diseases are classified by the World Health Organization as Neglected Tropical Diseases. It is an acute and chronic parasitic disease caused by blood flukes called schistosoma. People become infected when larval forms of the parasite (worms) penetrate their skin during contact with infested water. 

The disease can present in two main forms: intestinal and urogenital schistosomiasis. Intestinal schistosomiasis can result in abdominal pain, diarrhea,  blood in the stool, and liver and spleen enlargement in advanced cases. The most distinguishing symptom of urogenital schistosomiasis is haematuria (blood in urine). Fibrosis of the bladder and ureter, kidney damage, genital lesions and vaginal bleeding in women, and pathology of the seminal vesicles, prostate and other organs in men. In later stages, urogenital schistosomiasis may lead to bladder cancer and infertility.

The disease is endemic to Nigeria and existing data places Nigeria as home to the highest number of recorded cases in the world. While there are insufficient research data and medical records to paint a true picture of the disease burden in Nigeria, it is estimated that 29 million Nigerians are infected with the disease and almost half of this number are children.

In June and July, eHealth Africa partnered with Emory University on a study to compare three diagnostic methods to determine their effectiveness in detecting acute and chronic schistosomiasis in low-resource settings. Accurate diagnostics are crucial to yield more information about the disease and ultimately, to achieve the goal of eliminating the disease. One of the major challenges facing the elimination of schistosomiasis is that very few infected people present at the health facilities for treatment. This can be attributed to a myriad of reasons including stigma, insufficient medical services, affordability of medical services, low knowledge of the signs and symptoms of the infection, and local perceptions and myths about the disease. The wider effect of this passive case finding (that is, cases are discovered only when infected persons visit the health facilities for treatment) and poor health-seeking behavior is that there is inadequate data to support the prioritization of schistosomiasis control by decision-makers and health program planners. In addition, medical laboratory scientists and researchers are unable to make improvements to diagnostic procedures for schistosomiasis because very few patients visit health facilities to access treatment.

During this study, eHealth Africa and two Emory University MPH students also trained 10 community health workers to administer questionnaires aimed at assessing the knowledge, attitudes, and perceptions about Schistosoma haematobium infection(urinary schistosomiasis) among communities in five Local Government Areas in Kano State.

Training of Community Health Workers

Training of Community Health Workers

The responses from the survey yielded astounding local interpretations of the symptoms of urinary schistosomiasis. Community members saw red urine (haematuria or blood in the urine) as a normal and rather harmless phenomenon, a rite of passage or a sign of manhood for young boys. It was also linked to the menstrual cycle for girls or women. Yet another misconception was that it could be caused by staying long hours under the sun. Among women especially, underreporting of the disease was exacerbated by socio-cultural norms and beliefs that prevent them from handling urine samples in public.

Administering questionnaires at Sani Marshal Government Arabic Secondary School, Kura LGA, Kano State

Administering questionnaires at Sani Marshal Government Arabic Secondary School, Kura LGA, Kano State

With this understanding and the results of the study, eHA and Emory University hope to influence policies, strategies and plans around the diagnosis and control of Schistosomiasis in Nigeria.