Pediatric cancer

Location : Uganda

Disease : Cancer

Project type: mixed methods study

Satus: on-going

Expected end date: End of 2026

Context

Pediatric cancer is a significant cause of morbidity and mortality in low- and middle-income countries (LMICs), where 85% of the world's 400,000 annual cases occur, including nearly 100,000 in Africa. In Uganda, an estimated 3,000 new cases arise annually, yet only about 1,000 cases are diagnosed annually, with about 75% presenting at advanced stages. Survival rates for pediatric cancer in LMICs, including Uganda, remain at 20-30%, compared to over 80% in high-income countries.

Diagnostic delays and poor outcomes might result from a combination of poor access to care, socio-economic and cultural barriers within communities, lack of community awareness of childhood cancer, of its signs and symptoms, and of the relevance of seeking timely care. These issues are compounded by systemic challenges, including constraints in human resources, diagnostic infrastructure, and referral pathways. Primary healthcare workers may lack the knowledge and training to identify early cancer signs and symptoms in routine practice, leading to frequent misdiagnoses, as cancer symptoms can look like those of common diseases like malaria, tuberculosis, or pneumonia. Additionally, inadequate diagnostic infrastructure in most peripheral healthcare settings prevents early detection of cancer. Families and caregivers also face difficulties navigating complex referral pathways, leading to further delays in reaching specialized care. Treatment abandonment further compounds these challenges. 

Efforts to improve early paediatric cancer diagnosis in Uganda require interventions tailored to local needs. Unfortunately, the lack of reliable data hinders the development of evidence-based interventions and targeted public health policies.

Qualitative and quantitative studies are needed to understand patient pathways, obstacles to diagnosis, and identify effective strategies for improvement.

The pediatric cancer project is divided into two parts

• Establishing a high-quality database of Mbarara Regional Referral hospital (MRRH)’s paediatric cancer patients (quantitative approach)
• Better understanding the experiences and barriers encountered by patients, caregivers and health care workers in early diagnosis and management of childhood cancer in southwestern Uganda (qualitative approach)

Both parts are complementary and will mutually enhance each other. Their combination in a mixed-methods design will allow to thoroughly investigate the diagnostic pathways for childhood cancers in southwestern Uganda. Together, the findings will inform the development of interventions and decision algorithms to guide the diagnosis of childhood cancers.

Enhancing Childhood Cancer Research in Mbarara, Uganda: Collecting Improved-Quality Patient Data 

Objectives

The general objective is to collect and analyse high-quality data on childhood cancer patients treated at the Paediatric Cancer Unit (PCU) in order to describe their clinical and demographic characteristics, health pathways and to understand delays in diagnosis and associated factors.  

The specific objectives include: 

1. To describe patients’ demographics, clinical presentations, diagnostic and outcome.
2. To describe the patient journey from symptom onset to confirmed cancer diagnosis and treatment initiation, including the referral pattern and timelines.
3. To estimate the average time from symptom onset to confirmed cancer diagnosis and treatment initiation, including total, caregiver-related, and health system-related delays, while identifying associated factors, globally and by cancer type. 

4. To describe the specific warning signs, symptoms or events that prompted the patient’s caregiver to seek health care and that prompted the healthcare workers to refer the patients to tertiary care. 

    

Intermediate results

The overarching objective of this study is to comprehensively explore the diagnostic and treatment pathways of childhood cancers in southwestern Uganda─ specifically (i) examining the delay periods from onset of symptoms to diagnosis and from diagnosis to treatment initiation and associated factors, (ii) assessing the experiences and perceptions of caregivers/caretakers, and the broader community and (iii) identifying both barriers and facilitators to early detection and timely intervention encountered by health care providers and families─ in order to uncover underlying causes of delays and inform strategies that enhance early detection, diagnosis, and improve treatment outcomes for childhood cancers. 

Objectives;

• To investigate the delays in the diagnosis and treatment of common childhood cancers by using the 3 Delays Model (patient, health system and treatment delays), and to describe the implications of these delays on patient outcomes in southwestern Uganda.
• To explore the lived experiences of caregivers/caretakers of children diagnosed with cancer─ from initial recognition of symptoms through diagnosis and treatment.   
• To explore the perceptions of health care providers, community members and leaders on delays in diagnosis and treatment of childhood cancer.
• To collaboratively develop and refine context-specific diagnosis and treatment algorithms for childhood cancers by integrating Human centered design principles and expert consensus using Delphi method.

Partners

Paediatric Cancer Unit-Mbarara Regional Referral hospital, MSF-OCP