| dc.description.abstract | Introduction: Late presentation of pediatric cancers is common in sub- Saharan African countries, including Uganda and is largely due to diagnosis delay; a combination of patient/caregiver delay and physician/ health system delays. Diagnosis delay allows for disease progression and ultimately can worsen treatment outcomes. However, there’s limited data on time to diagnosis and factors associated with delayed diagnosis of childhood cancers in Uganda. This study aimed to determine the median time to diagnosis from initial symptom recognition to diagnosis confirmation and associated factors among pediatric cancer patients in Mulago National Referral Hospital. Methods: This was a mixed methods study that utilized both quantitative and qualitative data collection methods. The quantitative study involved data abstraction from all records of children diagnosed with leukemia or lymphoma in the Pediatric Hematology Oncology department of Mulago National Referral Hospital from February 2019 to June 2023. Additionally, six key informant interviews and four focus group discussions were conducted with selected health workers and caregivers of the children diagnosed with cancer respectively. The quantitative data was collected using a data abstraction tool which was designed in open data kit (ODK) while the qualitative data was collected using key informant and focus group discussion interview guides. Quantitative data was downloaded into Microsoft excel and then transferred to STATA version 14 for statistical analysis. Descriptive statistics was performed to summarize data while Cox regression was used to determine the factors associated with delayed diagnosis. Qualitative data was analyzed using thematic analysis. Results: Records of 384 children with cancer were included in the study. Majority, 65.4% (253/387) of the children were male. The median age was 8 years with an interquartile range (IQR) of 4.7 -11.7 years. More than half of the children, 57.4% (222/384) were not in school. More than half of the children, 58.7%, (227/387) were from the central region and resided in rural setting, 60.7%, (235/387). Overall, the median time from symptom onset to diagnosis confirmation was 47 days (IQR: 21.0 – 107.0). Additionally, the median time from symptom onset to diagnosis confirmation for leukemia patients was 31.0 days (IQR:16.0 – 85.0) while that for lymphoma patients was 68.0 days (IQR: 32.3 – 175.8). At any given time, children with lymphoma were 51% less likely to receive a diagnosis confirmation compared to those with leukemia. From the qualitative findings, caregiver related factors influencing the time between symptom recognition and diagnosis were; caregiver knowledge gaps, financial access barriers, caregiver health-seeking behaviors and health beliefs. Health system factors influencing the time between symptom recognition and diagnosis among children were; lack of provider expertise, diagnostic tools, inaccurate diagnosis, and ineffective referral mechanisms. Conclusion: The study found that the average duration from initial symptom recognition to diagnosis confirmation was 47 days. Various factors, including gaps in caregiver knowledge, financial barriers, caregiver health-seeking behaviors and beliefs, as well as health system factors such as lack of expertise among providers, insufficient diagnostic tools, inaccurate diagnoses, and ineffective referral processes, influenced the time between symptom recognition and diagnosis among children. There is need for targeted interventions to address both caregiver and health system barriers so as to promote timely diagnosis and treatment of pediatric hematological cancers. | en_US |
