Introduction
Cancer is a rare event in the pediatric population with an estimated 280,000 new cases reported in 2020 among children and adolescents globally according to the International Agency for Research on Cancer (IARC). Yet it’s one of the major causes of death. It accounts for over 100,000 deaths globally before the age of 15 with a majority of them in countries with limited resources1. Most low and middle income countries (LMICs) do not collect data on the incidence and prevalence of cancer in the younger population thus the exact cancer burden, which can vary according to geographical regions, is unknown. In Pakistan, it is estimated that around 8000 children are diagnosed with cancer each year2 which accounts for almost 10% of all reported cases for cancer in the country3.
In the absence of a national pediatric cancer registry in Pakistan, data can only be obtained from studies reporting regional cancer incidence through hospital based cancer registries4. Hence, planning of tailored national anti-cancer health policies and awareness campaigns is limited. This could be especially useful considering LMICs have a higher mortality compared to incidence for several cancer types therefore after prevention strategies, early detection and better treatment options would help decrease the cancer burden.
Several hospital based cancer registries exist in Pakistan such as Karachi Cancer Registry (for adults) and Punjab Cancer Registry maintained by Shaukat Khanum Memorial Cancer Hospital and Research Center. These collect clinical data and provide essential information to track incidence of cancer cases and the patterns of cancer care plans available over time that can be utilized to improve the quality of care and eventually, to form the basis for coding, summarizing and analyzing population based studies. Environmental and genetic risk factors can also be detected to help identify and develop preventive strategies. They can also be used to assess implementation of standard guidelines and evaluate outcomes of protocols including long term effects of cancer treatment for a more tailored treatment approach since clinical practice guidelines, such as those provided by Children’s Oncology Group (COG), International Society of Pediatric Oncology (SIOP), National Comprehensive Cancer Network (NCCN), European Society for Medical Oncology (ESMO) and American Society of Clinical Oncology (ASCO), etc. that are available to standardize cancer care, are often adapted according to local evidence and patient outcomes.
This paper aims to report local data about the pediatric cancer patients presenting to Aga Khan University, Karachi’s largest tertiary care hospital and one of only five hospitals providing care to pediatric cancer patients in the province of Sindh. Since patients come to AKUH from all over the province for quality and specialized care, this registry can potentially provide an estimate of the epidemiology of cancer in Sindh. Data can also be consolidated with cancer cases from the other hospitals in the province equipped to deal with pediatric cancer to form a consolidated population based registry for this region. This would ultimately help with more streamlined research of causes and introduction as well as implementation of childhood cancer control practices.