Hospital-Based Surveillance System Development in Patients with Hematological Malignancies undergoing Bone Marrow Transplant in Middle-Income Countries- the Case of Iran experience: Research Protocol

Abstract

Background In patients with hematological malignancies undergoing bone marrow transplants, both cancer surveillance programs and cancer registries play crucial roles in monitoring and improving patient outcomes. This research protocol aims to establish a hospital-based surveillance system for patients with hematological malignancies undergoing bone marrow transplantation (BMT) in Iran, utilizing a mixed-methods approach. Methods The study will involve quantitative data collection through medical record reviews and qualitative data collection through action research. To evaluate the feasibility and acceptability of the surveillance system among healthcare providers and patients, an assessment was conducted. This involved organizing an expert panel and conducting focus groups. Given the absence of a standardized data collection format for the patients under study, we are taking steps to develop a Bone Marrow Transplantation Registry Electronic System in educational hospitals. Results We utilized a standardized format developed by the EBMT and CIBMTR, along with input from expert panels and focus groups, to review the literature on hematological malignancies. We have created a Bone Marrow Transplant Registry Checklist, designed as a tool for data collection. It incorporates validated MDS elements tailored to five distinct types of hematological malignancies. We utilized a passive data collection method to continuously gather pertinent information and created a web-based data collection tool for continuous monitoring and evaluation of treatments. Analytical reports were generated in the form of operational dashboards, providing valuable feedback on analyses during the surveillance process. A pilot test of the registry surveillance system was conducted to ensure alignment with standard procedures and to identify and address any systematic or random errors. Conclusions This research protocol outlines the methodology for establishing a system and emphasizes the importance of implementing standardized monitoring protocols in middle-income countries to enhance the evaluation of treatment outcomes among patients with hematological malignancies undergoing HSCT. This system can help identify gaps in available data and treatment modalities during procedures like HSCT. It can facilitate quality improvement and ultimately enhance patient outcomes by engaging with other decision-makers and supporting the growing efforts in middle-income countries in the concept of action research.