Fogarty Fellow: Anthony Kayiira
Anthony Kayiira, MBChB, MD, MSc
Nominated From: University of Minnesota
Research Site: Makerere University, Uganda
Primary Mentor: Rahel Ghebre
Reproductive Health Outcomes Among Childhood and Young Adult Cancer Survivors in Uganda: a qualitative study
Cancers in children and young adults make up a third of the cancer burden in Uganda. Although the current long-term survival rates for most cancers within this age group in Uganda are low, among these cancer survivors there is reproductive failure. The aim of this study is to establish the extent of reproductive morbidity associated with cancer treatment among young cancer survivors in Uganda. We will utilize the Kampala cancer registry to collect demographic and treatment outcome data. Using this cancer registry data, a survey will be conducted among eligible cancer survivors to obtain information about reproductive morbidity. In-depth interviews of current young cancer patients, their families and health workers to gain insight into the knowledge, perceptions and attitudes towards reproductive morbidity associated with cancer treatment.
In Uganda, data from the Kampala and Gulu cancer registries recorded an increase in cancer incidence over the last two decades. This is echoed by data from the global cancer observatory, which estimates the age standardized incidence rate at 151.7 per 100,000 for males and 154.5 per 100,000 for females. In males, 30% of these cancers occur in those between 30-49 years and 13% occur in boys under 15 years. In females, 43% of cancers occur in those between 30-49 years and 5% occur in girls under 15 years. Being a low-income country, a survival rate of cancer is low, at 33%, across all cancer types but higher than previous estimates two decades ago.
Taken together, despite unknown young-adult estimates, there are more than 5,000 pediatric cancer survivors each year in Uganda. These young cancer survivors are at risk of reproductive morbidities associated with cancer treatment. These reproductive morbidities include, but are not limited to amenorrhea, premature menopause and subfertility in females, and testicular failure in males.
Despite the global campaign, by ISFP, ASCO, NICE and ESMO to increase access to fertility preservation for young cancer patients, there is no current initiative in Uganda. There is inadequate awareness and policies in Uganda on cancer-related reproductive morbidity. Much of this lack of advocacy stems from lack of data about reproductive morbidity among cancer patients in Uganda. Secondly, there is no data about the perceptions and attitudes toward cancer-related reproductive morbidity among cancer patients, the health workers, the caregivers and policy makers. The reproductive outcomes among at-risk cancer survivors and the perceptions and attitudes surrounding cancer-related reproductive morbidity, will be used as a tool to raise awareness and advocacy for fertility preservation in at-risk childhood and young cancer patients.