Challenges Of Managing Cancer Registry Data Quality In Head And Neck Cancer (HNSCC) At a Lower-Middle-Income-Country (LMIC)

Background Oral squamous cell carcinoma (SCC) is the leading cause of cancer in Pakistani males. With 17,000 new cases and 10,000 deaths caused by oral SCC annually, it is imperative to maintain an accurate record to highlight regional distribution, cause of mortality, quality of life, prevention strategies, and issues like under-reporting. Objectives This study aims to determine the quality of data entered at our institute’s registry (Aga Khan University Hospital; AKUH) and to identify the challenges faced while managing this registry. Methods The study includes all patients in our database who presented to AKUH from 2018–2020 and were diagnosed with primary oral SCC. Inclusion criteria for cancer sites was based on The International Classification of Diseases for Oncology ICD-0-3 guidelines. Variables from each patient in the CNExT database were selected and the data was analyzed for completeness, validity, and timeliness. Results In our study, 71% of cases were > 40 years of age with 82% being male. 59% had a history of smokeless tobacco use. Cheek mucosa was the most common site (55%) followed by the ventral surface of the tongue (19%), lower gum (7%) & others (21%). Out of the 200 cases, 59% were clinically staged as IVA, 13% as stage II, and 12.5% as stage III. 96% of patients underwent surgical excision while 63% and 57.5% received radiation and chemotherapy respectively. Disease-free survival was < 1 year for 21% of cases and 1–2 years for 25%. Recurrence was reported in 24% of cases. In addition, patients presenting with T4 disease and ENE positivity recurred earlier. 72% were lost to follow-up. The data was 100% complete with 98.5% validity but 0% timeliness, which reflected the backlog due to resource constraints. Conclusion Cancer registry data quality for HNSCC in LMIC can vary significantly, however, it provides a basis to quantify the cancer burden. Managing data quality has several limitations which can be addressed by capacity-building and bridging cancer registries through national and international collaborations. These initiatives can help improve data quality and enhance cancer control and healthcare planning in LMICs.