Humanitarian Health Action

The role of surveillance officers in the investigation of the Nodding Syndrome


13 October 2011 ¦ Western Equatorial State, Southern Sudan--Jackson Hassen is a 39 year old man who hails and lives in Yambio county in Western Equatorial state (WES) of Southern Sudan. He works as the State Surveillance Officer for WES a job he has held since December 2006. He describes how the involvement of surveillance officers made the investigation for Nodding Syndrome a success at all levels and the community.

30 May - 7 June 2011, the Government of Southern Sudan Ministry of Health in collaboration with the World Health Organization, UNICEF and Centre for Disease Control and Prevention launched an investigation of the Nodding Syndrome (NS) to establish; ascertain that the NS observed in South Sudan is the same as in other parts of the world, a case definition, describe the disease further, confirm risk factors that have been identified in prior investigations and identify possible new risk factors for the NS and initiate investigations to ascertain a thorough epidemiological description of distribution and burden of disease in South Sudan, says Jackson.

During this investigation Jackson says, Surveillance officers at the payams, county and state level in Western Equatorial State played a very instrumental role in ensuring that the investigations were all involving and none biased. “It’s because of surveillance that we discovered many cases of the NS in Mundri East, Mundri West, Maridi and Mvolo, the investigation sites, this is attributed to a good Integrated Disease Surveillance and Response system in place” Said Jackson. Thanks to the financial support of USAID, have supported WHO to strengthen the surveillance system in Southern Sudan.

He says that during regular surveillance data collection and reporting, health workers in the facilities in Mundri East and West, Maridi and Mvolo discovered that many children were reporting to the health units with a strange disease. At the same time community health workers were also reporting of a disease that could cause nodding amongst children mainly during meal times. The County surveillance Officers were notified and they moved down to confirm the rumor by line listing all suspected cases. When the county surveillance officers confirmed the rumor of children nodding, they immediately informed the State surveillance officer who notified to the State Ministry of Health and the GoSS Ministry of Health. The GOSS Ministry of Health took actions seeking technical assistance from the World Health Organization, CDC Atlanta and UNICEF.

Through the strong network of the surveillance system in the affected communities, the magnitude of the NS got known. However the role of the surveillance officers did not stop at that. During the actual investigation, says Jackson, the surveillance officers participated in the identification of households from which the patients and control groups were selected. And also the line listing of NS patients prepared by the surveillance officers have been used a guidance to select the investigation site and also identify the target age groups. The Case definition for the enrollment included: Head nodding as defined as repetitive dropping of the head as reported by caregivers, Neurological abnormalities in addition to head nodding such as perceived cognitive difficulties or other seizure types, developmentally normal before the onset of NS and attended to by a care giver who is and able to understand and give informed consent.

For the case controls, the case had to: be less than 18 years and have developed heading nodding in the past 3 years. To be a matched control, the child had to: be within 2 years of case age, have no evidence of head nodding, seizure or any other objective neurological abnormality and live in the same payam as the case. The work of the investigation teams would have been difficult and time consuming had the surveillance officers who are in close contact with people not been involved in availing all the information related case series. The clinical history of the patients and geographical distribution of the cases. Because they knew the patients and had ever come in to close contact with them, information availability was at close reach making it easier. They also played a tremendous in role in supporting the teams with the actual screening exercise of the patients.

Given that all surveillance officers are health workers, they participated in actually screening and health education. Health education was very vital because patients are desperate for drugs and thought that the investigation was meant for mass drug distribution, the surveillance officers had to support the investigation teams explain the study objectives to the patients, so that they do not get discouraged to participate in the study. They had to be convinced that this study was not meant for drug distribution but to try to establish some factors related to the disease. Surveillance officers in Western Equatoria and Central Equatoria States will continue reporting the new NS cases and also follow up the existing patients.

Since the investigating teams were not from the community under investigation, the surveillance officers supported the team with translations and negotiation with local administration and community chiefs. The investigations had to be simplified in to the local languages for easy of understandability to the community. Besides the surveillance officers supported the teams with ensuring that all children who participated in the study had food.

When concluding his story, Jackson emphasized the role of surveillance and the Surveillance Officers cannot be down played, either during reporting, response or investigations. WHO will therefore continue with her support towards surveillance that comes inform of Training, Motorcycles, Bicycles, communication equipments and fuel so that the surveillance system is further strengthened to assist in responses towards diseases like the NS. Ministry of Health and WHO are so grateful to USAID for its commitment to provide the required resources to build the capacity of surveillance system and expand the IDSR strategy to all counties in southern Sudan.

For more information

Pauline Ajello, Communications Officer,
WHO South Sudan