We conducted a house-to-house survey in the Mundri, Western Equatoria state of South Sudan to investigate the clinical characteristics, risk factors, access to treatment and perceptions about nodding syndrome (NS). In total, 224 NS cases with median age of seizure onset of 10 years were identified. Head nodding only was reported in 50 (22.3%) cases, and head nodding plus other types of seizures in 174 (77.7%) cases. Wasting, stunted growth, delayed sexual development and speech and behavioral abnormalities were observed in 17 (23.6%), 16 (22.2%), 9 (17.3%), 14 (19.4%) and 4 (5.6%) cases, respectively. The consumption of rat meat, but not other bushmeat was associated with an increased risk of NS (OR 9.31, 95% CI 1.27–406.51). Children with NS were more likely to have taken ivermectin in the last 5 years (OR 2.40, 95% CI 1.33–4.43). NS cases were less likely to share a bedroom with other children (OR 0.06, 95% CI 0.02–0.16) or adults (OR 0.27, 95% CI 0.13–0.56). In conclusion, rat meat consumption is an unlikely risk factor for NS, and ivermectin intake was more common among NS cases than controls. Importantly, we documented that children with NS are stigmatized because of the misconception that NS is transmitted through direct contact.

Between September 2020 and March 2021, Mercy Corps piloted hybrid digital (CAPI) and paper-based (PAPI) data collection as part of its tuberculosis (TB) active case finding strategy. Data were collected using CAPI and PAPI at 140 TB chest camps in low Internet access areas of Punjab and Khyber Pakhtunkhwa provinces in Pakistan. PAPI data collection was performed primarily during the camp and entered using a tailor-performed CAPI tool after camps. To assess the feasibility of this hybrid approach, quality of digital records were measured against the paper “gold standard”, and user acceptance was evaluated through focus group discussions. Completeness of digital data varied by indicator, van screening team, and month of implementation: chest camp attendees and pulmonary TB cases showed the highest CAPI/PAPI completeness ratios (1.01 and 0.96 respectively), and among them, all forms of TB diagnosis and treatment initiation were lowest (0.63 and 0.64 respectively). Vans entering CAPI data with high levels of completeness generally did so for all indicators, and significant differences in mean indicator completeness rates between PAPI and CAPI were observed between vans. User feedback suggested that although the CAPI tool required practice to gain proficiency, the technology was appreciated and will be better perceived once double entry in CAPI and PAPI can transition to CAPI only. CAPI data collection enables data to be entered in a more timely fashion in low-Internet-access settings, which will enable more rapid, evidence-based program steering. The current system in which double data entry is conducted to ensure data quality is an added burden for staff with many activities. Transitioning to a fully digital data collection system for TB case finding in low-Internet-access settings requires substantial investments in M&E support, shifts in data reporting accountability, and technology to link records of patients who pass through separate data collection stages during chest camp events.