Magnitude and factors associated with diagnosis delay for childhood malignancies seen at the Uganda Cancer Institute.

Abstract

Background: Despite great advances in childhood cancer treatment, survival rates have continued to be low in low- and middle-income countries with as low as 15% of children being reported to be cured as compared to more than 80% of children who are cured in high-income countries. Delay in cancer diagnosis, the reasons for which may be multifactorial has been reported as one of the major contributors to low survival rates. In Uganda, a study done about a decade ago in children with Burkitt’s lymphoma reported a median total delay of 90 days. In recent years, the Uganda Cancer Institute (UCI) has improved diagnosis, treatment, and follow-up of children with childhood cancers, in addition to a comprehensive community cancer program (CCCP) which is tasked to create awareness in the population. However, there is no documentation of how these improvements have impacted the cancer diagnosis cascade. Study objective: The study aimed to determine the magnitude of cancer diagnosis delay and factors associated with diagnosis delay among children aged less than 18 years diagnosed with cancer at Uganda Cancer Institute. Methodology: This was a hospital-based cross-sectional study at the Uganda Cancer Institute (UCI) with quantitative and qualitative methods of data collection. One hundred and sixty-two (162) primary caregivers of children less than 18 years old with a confirmed cancer diagnosis were enrolled. Quantitative data was collected using a structured questionnaire. Qualitative data was collected using in-depth interviews with sixteen caregivers and eight key informants (health workers). Informed consent was sought from the study participants before enrollment into the study. Quantitative data was entered into a password-protected computer using Epi data 3.1 and analyzed using STATA version 14. Cancer diagnosis delay was considered significant when it was more than 2months (eight weeks). The Median in weeks and interquartile range was used to summarize diagnosis delay, while chi-square was used to compare proportions, and simple logistic regression analysis was used at the bivariate and multivariable analysis levels. Adjusted Odds Ratio was used as a measure of association. A p-value < 0.05 was considered significant. Qualitative data was transcribed, coded, categorized, and analyzed using a content thematic approach. Direct quotations were used to present the results. Results: Caregivers of 162 children whose age range was 0 to 17 years with cancer were interviewed. Out of those, 139(85.8%) had a diagnosis delay. The median diagnosis delay was 21 weeks (IQR 14-40). Children older than 10 years of age were five times more likely to have cancer diagnosis delay compared to those below five years (AOR=5.19, 95% CI (1.13-23.84), p-value 0.034), and children who presented with painless swelling were 6 times more likely to have diagnosis delay compared to other children with other symptoms (AOR=6.11, 95% CI (1.62-22.88), p-value 0.007). Sex, caregiver’s level of education, and cancer type did not significantly impact diagnosis delay. Inadequate knowledge of childhood cancer amongst health professionals and the general population, negative religious and cultural beliefs, financial constraints, and referral delays were some of the identified reasons for diagnosis delay in qualitative interviews. Conclusion: This study demonstrated a considerable diagnosis delay in our setting largely contributed by health care system delay. Diagnosis delay was associated with older age at diagnosis and having non-specific painless swelling. Recommendation: Efforts should be made to increase public awareness. Further training and continuing medical education to improve recognition of cancer symptoms among health workers and strengthen diagnostic facilities