Measuring Leprosy Case Detection Delay and Associated Factors in Southeast Nigeria
Generating local evidence on case detection delays and associated factors in leprosy in Southeast Nigeria.
Breaking the Silence: Community Education and Strengthening Primary Health Care Capacity for Early Detection, Stigma Reduction, and Quality-of-Life Improvement in Hansen Disease in Ebonyi State, Nigeria
Community education and PHC capacity strengthening for early detection, stigma reduction and improved quality of life in Hansen disease.
Catalyzing AI4SkinNTDs: Accelerating Equitable Artificial Intelligence Use through Participatory Co-design of SelfCareQA Dataset by Persons Affected by Skin-NTDs (AI4SkinSelfCare)
Participatory co-design of a culturally competent Q&A dataset to support equitable AI for skin-NTD self-care.
Project Details
Select a project above or browse the detailed portfolio below.
COMPLETED
Measuring Leprosy Case Detection Delay and Associated Factors in Southeast Nigeria
Project Team
Principal Investigator
Ms. Chinwe Eze — PRIME Data Nexus
Hansen's disease (leprosy), caused by Mycobacterium leprae, remains the leading cause of permanent infectious disability globally. While the global implementation of multi-drug therapy has steadily decreased overall case numbers, the persistence of high Grade 2 Disability (G2D) rates—characterized by visible deformities—remains a critical hurdle in disease control.
G2D is a direct indicator of prolonged delays in diagnosis and treatment, which in turn fuel community transmission, compound social stigma, and severely restrict social participation. Although the global average G2D rate among new cases is 5.4%, Nigeria consistently reports much higher levels, averaging 13% nationally and climbing to an alarming 25% in its Southeast region.
Despite these high rates, contemporary research on the specific patient and health system factors driving these delays remains scarce in Nigeria. The study aimed to generate robust local evidence on the duration and predictors of case detection delays in Southern Nigeria to inform public health policy. Concurrently, the project culturally adapted and validated the 9-item Case Detection Delay (CDD) questionnaire—originally developed for the PEP4LEP project in East Africa—to establish its conceptual, semantic, and operational validity in Igbo.
EVIDENCE & OUTPUTS
What the project found
Key Results
- The Igbo version of the Case Detection Delay Questionnaire demonstrated good validity and reliability and is suitable for assessing leprosy case detection delay among Igbo-speaking populations in Nigeria.
- Median case detection delay was 74.0 months (IQR: 46.0–114.0), comprising a median patient delay of 58.0 months (IQR: 36.0–95.2) and a median health system delay of 0 months (IQR: 0–12.5).
- All participants experienced delays exceeding six months, and 55% presented with Grade 2 Disability (G2D) at diagnosis.
- The number of healthcare consultations was positively associated with case detection delay, while higher stigma scores were negatively associated with case detection delay.
- Distance to the nearest health facility was the only factor independently associated with patient delay.
- Qualitative findings identified poor knowledge and awareness of leprosy, normalization of early symptoms, reliance on informal care providers, financial constraints, geographic barriers, and limited diagnostic capacity among healthcare workers as key contributors to delayed diagnosis.
Research Outputs
Translation and Cross-cultural Validation of Leprosy Case Detection Delay Questionnaire Among Persons Affected by Leprosy in Southeast Nigeria
View Preprint →Measuring Leprosy Case Detection Delay and Associated Factors in Southeast Nigeria: A Community-Based Study
View Preprint →FROM EVIDENCE TO ACTION
What the evidence suggests
The findings point to the importance of stronger community awareness, improved geographic access to leprosy services, strengthened diagnostic capacity among frontline healthcare workers, and more effective engagement of informal care providers within referral pathways.
ONGOING
Breaking the Silence: Community Education and Strengthening Primary Health Care Capacity for Early Detection, Stigma Reduction, and Quality-of-Life Improvement in Hansen Disease in Ebonyi State, Nigeria
Project Team
Principal Investigator
Dr. Ijeoma Agbara — Alex Ekwueme Federal University Teaching Hospital
Co-Investigators
Dr. Nkechi Enechukwu — Nnamdi Azikiwe University Teaching Hospital, Nnewi
Ms. Chinwe Eze — PRIME Data Nexus
Dr. Thomas Nnaji — Alex Ekwueme Federal University Teaching Hospital
Dr. Malachy Echezona — Nnamdi Azikiwe University Teaching Hospital, Nnewi
Ms. Chinwe Eze — PRIME Data Nexus
Dr. Thomas Nnaji — Alex Ekwueme Federal University Teaching Hospital
Dr. Malachy Echezona — Nnamdi Azikiwe University Teaching Hospital, Nnewi
This community-based initiative in Ebonyi State, Nigeria, addresses persistent challenges associated with leprosy (Hansen disease). The project focuses on strengthening primary healthcare by training medical workers and volunteers to improve early diagnosis and clinical management.
Simultaneously, the intervention seeks to dismantle the deep-seated social stigma and cultural misconceptions that often prevent individuals from seeking timely treatment. Through educational campaigns and radio broadcasts, the team aims to increase public awareness and decrease high rates of Grade 2 disability.
The project uses a mixed-methods approach to evaluate how capacity building and community engagement can enhance the overall quality of life of people affected by Hansen disease. Ultimately, the initiative seeks to reduce transmission and foster a more inclusive environment for patients within the region.
ONGOING
Catalyzing AI4SkinNTDs: Accelerating Equitable Artificial Intelligence Use through Participatory Co-design of SelfCareQA Dataset by Persons Affected by Skin-NTDs (AI4SkinSelfCare)
Project Team
Principal Investigator
Dr. Ngozi Murphy-Okpala — Vertex Health Limited
Co-Investigators
Ms. Chinwe Eze — PRIME Data Nexus
Mr. Ogochukwu Bielonwu — ValueDrive Strategic Solutions Ltd
Ms. Amaka Onyima — IMPACT Group / Anambra State TB, Leprosy and Buruli Ulcer Control Program
Dr. Ngozi Ekeke — German Leprosy and Tuberculosis Relief Association
Mr. Ogochukwu Bielonwu — ValueDrive Strategic Solutions Ltd
Ms. Amaka Onyima — IMPACT Group / Anambra State TB, Leprosy and Buruli Ulcer Control Program
Dr. Ngozi Ekeke — German Leprosy and Tuberculosis Relief Association
Implementing Partner / Host Institution
RedAid Nigeria
The AI4SkinSelfCare project is designed to create a culturally competent Q&A dataset for managing neglected tropical diseases (NTDs) that manifest on the skin. Using participatory action research, the study empowers people living with conditions such as Buruli ulcer, leprosy and lymphatic filariasis to co-design a question-and-answer dataset that reflects lived experiences rather than only Western medical models.
The team aims to bridge the digital divide by using this validated data to train equitable AI interventions and chatbots that provide safe, contextually relevant self-care advice in resource-limited settings. Beyond the technical output, the project also seeks to improve participants' self-esteem and digital literacy while systematically addressing internalized stigma associated with disfiguring diseases.
