Challenges in collecting information on sexual orientation and gender identity for cancer patients: perspectives of hospital and central cancer registry abstractors.

PURPOSE: Sexual and gender minority (SGM) populations experience cancer treatment and survival disparities; however, inconsistent sexual orientation and gender identity (SOGI) data collection within clinical settings and the cancer surveillance system precludes population-based research toward health equity for this population. This qualitative study examined how hospital and central registry abstractors receive and interact with SOGI information and the challenges that they face in doing so. METHODS: We conducted semi-structured interviews with 18 abstractors at five Surveillance, Epidemiology, and End Results (SEER) registries, as well as seven abstractors from commission on cancer (CoC)-accredited hospital programs in Iowa. Interviews were transcribed, cleaned, and coded using a combination of a priori and emergent codes. These codes were then used to conduct a descriptive analysis and to identify domains across the interviews. RESULTS: Interviews revealed that abstractors had difficulty locating SOGI information in the medical record: this information was largely never recorded, and when included, was inconsistently/not uniformly located in the medical record. On occasion, abstractors reported situational recording of SOGI information when relevant to the patient's cancer diagnosis. Abstractors further noticed that, where reported, the source of SOGI information (i.e., patient, physician) is largely unknown. CONCLUSION: Efforts are needed to ensure standardized implementation of the collection of SOGI variables within the clinical setting, such that this information can be collected by the central cancer registry system to support population-based equity research addressing LGBTQ + disparities.

Epidemiological Trends in Gastrointestinal Cancers in China: An Ecological Study.

BACKGROUND: In recent decades, the patterns and trends of gastrointestinal (GI) cancer epidemics in Chinese population have been changing. AIMS: To present the epidemiological trends and geographic distributions of four major GI cancers (esophageal cancer, stomach cancer, liver cancer and colorectal cancer) in China from 2010 to 2014. METHODS: It used standardized data extracted from the National Central Cancer Registry database. RESULTS: The age-standardized incidence rates (ASIR) of esophageal cancer decreased from 16.7 to 12.2 per 100,000 and the age-standardized mortality rates (ASMR) decreased from 12.0 to 8.8 per 100,000. The ASIR and the ASMR of stomach cancer dropped from 23.7 to 19.5 per 100,000 and from 16.6 to 13.3 per 100,000. The ASIR of liver cancer fell from 21.4 to 17.8 per 100,000 and its ASMR fell from 18.4 per 100,000 to 15.3 per 100,000. The ASIR of colorectal cancer increased from 16.1 to 17.5 per 100,000, whereas the ASMR fluctuated between 7.6 and 7.9 per 100,000. Moreover, the incidence and mortality of each cancer differed between males and females, urban and rural residence, as well as various regions. CONCLUSION: From 2010 to 2014, esophageal cancer, stomach cancer and liver cancer showed downward trend, while the ASIR of colorectal cancer slightly rose and its ASMR presented stable.

Trends in the incidence of and survival rates for oral cavity cancer in the Korean population.

OBJECTIVE: This study assessed trends in the incidence of and survival rates for oral cavity cancer in the Korean population. MATERIALS AND METHODS: Data from the Korea Central Cancer Registry were extracted for 10,282 patients diagnosed with oral cavity cancer (C01-C06) between 1999 and 2010 to evaluate the age-standardised incidence rate, annual percentage change (APC) and 5-year relative survival rate (RSR) according to gender and age. RESULTS: In males, the incidence rate slightly decreased [APC of -0.2% (P = 0.6427)]; in females, the incidence rate increased [APC of 3.1% (P < 0.05)]. In males and females, the incidence of oral tongue cancer (C02) significantly increased [APC of 2.2% and 4.1%, respectively (P < 0.05)]. This increase in oral tongue cancer incidence was most prominent in the younger age group (<40 years, APC = 6.1%, P < 0.05). The incidence of buccal cheek cancer increased only among males [APC of 4.8% (P < 0.05)]. The 5-year RSR improved from 42.7% (1993-1995) to 59.5% (2006-2010), corresponding to an increase of 16.8% from 1993 to 2010 (P < 0.05). CONCLUSION: The incidence of oral cavity cancer in females increased, whereas it stabilised or decreased in males. However, the incidence of oral tongue cancer increased in both males and females, especially in the younger age group.

Thyroid Cancer Incidence Among Korean Individuals: A Comparison of South Korea and the United States.

OBJECTIVE: To compare thyroid cancer incidence rates and trends between Korean, non-Korean Asian, and non-Hispanic White populations in the United States, and between the US Korean population and the South Korean population. METHOD: Population-based analysis of cancer incidence data. Cases of thyroid cancer diagnosed during 1999-2014 from the Korean Central Cancer Registry (KCCR) and the Surveillance, Epidemiology, and End Results (SEER) 9 detailed Asian/Pacific Islander subgroup incidence and population dataset were included. Incidence rates were obtained from the datasets, and annual percent change (APC) of the incidence rates was calculated using Joinpoint regression analysis. RESULTS: Thyroid cancer incidence rate for 1999-2014 was significantly higher for South Korea (48.05 [95% CI 47.89-48.22] per 100,000 person-years) than for the US Korean population (11.12 [95% CI 10.49-11.78] per 100,000 person-years), which was slightly higher than the Non-Korean Asian population (10.23 [95% CI 10.02-10.43] per 100,000 person-years), and slightly lower than the Non-Hispanic White population (12.78 [95% CI 12.69-12.87] per 100,000 person-years). Incidence rates in South Korea increased dramatically (average APC 17.9, 95% CI 16.0-19.9), significantly higher than the US Korean population (average APC 5.0, 95% CI 3.1-6.8), which was similar to the non-Korean Asian (average APC 2.5, 95% CI 0.9-4.2) and the non-Hispanic White (average APC 5.1, 95% CI 4.7-5.6) populations. CONCLUSIONS: South Korea's high thyroid cancer incidence rates cannot be attributed to genetic factors, but are likely due to health care system factors. LEVEL OF EVIDENCE: 3 Laryngoscope, 134:4156-4160, 2024.

Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer.

In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.

Characterization of Inflammatory Breast Cancer in Hispanic Women from Puerto Rico.

Background: Breast cancer (BC) is the most diagnosed cancer and the leading cause of cancer death among women in Puerto Rico (PR). Inflammatory breast cancer (IBC) is considered the most aggressive BC subtype. This study characterized the IBC population of Hispanic women living in Puerto Rico and aimed to estimate the IBC survival rate using data from the Puerto Rico Central Cancer Registry (PRCCR). Methods: This is a retrospective, population-based study using the PRCCR database and the Health Insurance Linkage Database (PRCCR-HILD). We analyzed data from patients that were diagnosed with IBC from January 1, 2008 to December 31, 2018. Patients were identified using the International Classification of Diseases for Oncology, 3rd edition (ICD-O-3) site codes C50.0-C50.9 and histology code 8530. Variables such as age at diagnosis, marital status, health insurance, geographic area of residence, staging variables, tumor receptor subtypes, treatment received, and overall survival (OS) were studied. Statistical analysis methods were employed to describe the population, estimate survival curves and examine the risk of dying. Results: The data of 51 patients were included. The mean age at diagnosis of IBC in the current study was 59 years old. A total of 62.8% of patients had no metastases at diagnosis and 64.7% were diagnosed with stage III disease. Most tumors presented with ER+/PR+/Her2- (21.6%), or a triple negative (ER-/PR-/Her2-, 15.7%) tumor concordance. The OS during the first year was 66% (90% CI: 0.54-0.76), whereas 36 months post-diagnosis was at a low 39% (90% CI: 0.27-0.59). The triple-negative subtype had the worst survival at 36 months (36% [90% CI: 0.11-0.62]). This study revealed through Cox regression analysis that women with stage IV disease and those with ER-/PR- tumor subtype have a higher risk of dying (HR 4.99; [90% CI: 2.30-10.83] and HR 4.74; [90% CI: 1.88-11.95]), respectively. Conclusions: Our results suggest that the Puerto Rican IBC patient population presents unique characteristics. This is the first research to describe the patient profile and characteristics of women diagnosed with IBC in PR. This research increases awareness about this lethal disease in PR.

Second primary cancers in patients with oral cavity cancer included in the Korea Central Cancer Registry.

OBJECTIVES: The improved survival of patients with oral cavity cancer (OCC) has generated interest in factors affecting survivorship, particularly among second primary cancer (SPC) patients. This study aimed to assess the incidence, patterns, and risk factors for SPC after OCC treatment in the Korean population. MATERIALS AND METHODS: Data from 15,261 patients with OCC (ICD-O: C01-C06) identified between 1993 and 2014 were extracted from the Korean Central Cancer Registry. The standardized incidence ratio (SIR) for SPC after index OCC was calculated, and Poisson regression analysis was performed to evaluate the risk factors for SPC among survivors. RESULTS: The overall SIR for SPC among OCC survivors was 1.47 (95% confidence interval [CI] 1.39-1.56). SIR differed by sex (male: 1.51 vs. female: 1.37), age at diagnosis (<45 years: 2.47 vs. 45-64 years: 1.68 vs. ≥ 65 years: 1.10), index OCC subsite (floor of mouth: 1.95 vs. gum: 1.30), follow-up duration (6-23 months: 1.64 vs. 24-59 months: 1.51 vs. 60-119 months: 1.48 vs. ≥ 120 months: 1.24), histological OCC type (salivary gland malignancy: 1.77 vs. squamous cell carcinoma: 1.44 vs. others: 1.47), and radiation history (any: 1.94 vs. no radiation: 1.37). The risk factors for SPC development among OCC survivors included younger age at diagnosis and history of radiation therapy. CONCLUSION: OCC survivors have significantly increased risks of SPCs, exhibiting distinctive site distributions and chronological patterns. These patients would benefit from an SPC surveillance protocol.

Conditional relative survival of oral cavity cancer: Based on Korean Central Cancer Registry.

OBJECTIVES: Conditional relative survival (CRS) describes the survival chance of patients who have already survived for a certain period of time after diagnosis and treatment of cancer. Thus, CRS can complement the conventional 5-year relative survival, which does not consider the time patients have survived after their diagnosis. This study aimed to assess the 5-year CRS among Korean patients with oral cancer and the related risk factors. MATERIALS AND METHODS: We identified 15,329 oral cavity cancer cases with a diagnosis between 1993 and 2013 in the Korea Central Cancer Registry. The CRS rates were calculated according to sex, age, subsite, histology, and stage at diagnosis. RESULTS: The 5-year relative survival was 57.2%, and further analysis revealed that the 5-year CRS increased during the first 2years and reached a plateau at 86.5% after 5years of survival. Women had better 5-year CRS than men after 5years of survival (90.0% vs. 83.3%), and ≤45-year-old patients had better 5-year CRS than older patient groups (93.3% vs. 86.4% or 86.7%). Subsite-specific differences in 5-year CRS were observed (tongue: 91% vs. mouth floor: 73.9%). Squamous cell carcinoma had a CRS of 87.3%, compared to 85.5% for other histological types. Localized disease had a CRS of 95.7%, compared to 87.3% for regional metastasis. CONCLUSION: Patients with oral cavity cancer exhibited increasing CRS rates, which varied according to sex, age, subsite, histology, and stage at diagnosis. Thus, CRS analysis provides a more detailed perspective regarding survival during the years after the initial diagnosis or treatment.