Journal of registry management最新文献

National efforts are underway to build a digital health system that can deliver existing knowledge real-time to increase evidence-based clinical decision-making and provide continuous learning models to reduce clinical errors. Electronic medical records and health information exchanges are increasing access to medical records for patients, professionals, and health systems. A next step will be to develop decision-support models with high-quality data from the clinical record. Patient findings that contribute to creating a diagnosis and a therapeutic plan-as well as all relevant outcomes measuring success or failure of such plans-need to be readily available as data to inform models. Registrars have been turning clinical narratives into high-quality standardized and structured data to monitor cancer trends for decades. Despite great success, it would be costly to scale this human-dependent process to include abstraction of all clinical and laboratory findings in real-time. Efforts to structure data after the fact using natural language processing have yielded mixed results. This article posits that cancer registrar professionals might play a new role in advising and assisting in the creation of novel approaches to abstracting high-quality clinical data. This would include building and auditing more standardized and structured clinical records, such as synoptic reports. Furthermore, in the absence of a single, comprehensive national patient registry, cancer registries are probably most qualified to take on the challenge of collecting, storing, and reporting all the additional clinical and biologic cancer data needed to build models that inform individual care and improve the overall quality of care. Improving the quality of patient care is the imperative behind national digital health care efforts. High-quality comprehensive cancer data will be a cornerstone to the success of this effort in oncology. Cancer registries and cancer registrar professionals have a lot to offer in the efforts to close the quality gaps in oncology care.

Background and objective: Liver cancer is composed of 2 main types, hepatocellular carcinoma (HCC) and cholangiocarcinoma (CCA). After years of increasing HCC incidence rates in the United States, declines have been noted in recent years, but CCA incidence rates have continued increasing. Given these variable trends; documented disparities by sex, age, and race/ethnicity; and shifting risk factors from viral infection (hepatitis B and C) to metabolic causes (obesity, diabetes, nonalcoholic fatty liver disease), we sought to assess the incidence rate trends for HCC and CCA in California to inform whether California trends are similar to those observed in the United States as a whole, whether these trends have continued in the most recent years for which data is available, and to identify at-risk groups that may benefit from targeted intervention.

Methods: Using SEER*Stat software, we calculated age-adjusted incidence rates (AAIR) by sex, age group, and race/ethnicity for patients aged ≥40 years diagnosed with HCC and CCA from 2010 to 2021 identified in the California Cancer Registry. We assessed the annual percent change (APC) over this period for each subgroup using Joinpoint software.

Results: For HCC, the AAIR significantly decreased for men (-2.68%) and women (-2.23%) since 2014. Significant decreases were observed for men among all racial/ethnic groups, but among women, decreases were only seen in Black and Asian/Pacific Islander patients. Decreases in AAIR were greatest among those aged 40 to 64 years (men, -7.01%; women, -7.79%) and increases were observed for men aged ≥75 years since 2010 (1.15%). For CCA, the AAIR significantly increased for men aged ≥75 years (2.8%) and for women in all age groups. Only White men had decreasing AAIRs.

Conclusion: HCC AAIR trends have declined in California, but not for all groups. Older men and Hispanic and White women did not experience the same reductions in HCC AAIR observed in other groups. CCA AAIR trends have increased among nearly all groups for women. Future research should focus on evaluating risk factors by liver cancer sub-type, and regular screening of individuals with risk factors should be considered.

Background: The New Hampshire State Cancer Registry (NHSCR) conducts recoding audits as resources allow to identify areas for quality improvement. Utilizing the National Program of Cancer Registries (NPCR) data quality evaluation (DQE) framework, the NHSCR conducted a selective recoding audit for melanoma of skin and bladder cancers diagnosed in 2018 to identify challenges and implement training for hospital registrars.

Purpose: The DQE can help determine whether central registries need to incorporate additional training for their reporters.

Methods: The NHSCR performed a recoding audit on random samples of melanomas of skin and urinary bladder cancers diagnosed in 2018. The audit included a review of data items with the lowest accuracy found on the national DQE and 3 additional data items recommended for review based on the national DQE findings.

Results: Accuracy rates were calculated on the quality of data items after performing follow-back to reporting sources to address discrepancies that were identified. Data items for melanomas of skin included tumor size summary, date of first course treatment, and treatment summary-surgery of primary site. Data items for urinary bladder cancers included grade clinical and grade pathological. The 3 additional data items include diagnosis date, histology, and date of first surgical procedure.

Discussion: Results from the recoding audit will be used to address training needs for New Hampshire cancer registrars.

After reading the article and completing the quiz, participants will be able to: Describe the limited research examining data quality in trauma registriesDescribe the registry staff satisfaction with the new data quality applicationUnderstand the method of survey results with 5-point Likert scales and free text responses.

Background: Women with early-stage ovarian cancer may be asymptomatic or present with nonspecific symptoms. We examined health care utilization prior to ovarian cancer diagnosis to assess whether women with higher utilization differed in their prognosis and outcomes compared to women with low utilization.

Methods: Using Medicaid, Medicare, and New York State Cancer Registry data for ovarian cancer cases diagnosed in 2006-2015, we examined selected health care visits that occurred 1-6 months before ovarian cancer diagnosis. We used multivariable-adjusted logistic regression to estimate odds ratios (ORs) and 95% CIs for associations of sociodemographic factors with number of prediagnostic visits and number of visits with tumor characteristics, and Cox proportional hazards regression to examine differences in survival by number of visits.

Results: Women with >5 vs 0 prediagnostic visits were statistically significantly less likely to be diagnosed with distant vs local stage disease (OR, 0.72; 95% CI, 0.54-0.96), and women with 3-5 or >5 vs 0 prediagnostic visits had better overall survival (hazard ratio [HR], 0.88; 95% CI, 0.80-0.96 and HR, 0.90; 95% CI, 0.83-0.98, respectively). In stratified analyses, the association with improved survival was observed only among cases with regional or distant stage disease.

Conclusions: Women with high health care utilization prior to ovarian cancer diagnosis may have better prognosis and survival, possibly because of earlier detection or better access to care throughout treatment. Women and their health care providers should not ignore symptoms potentially indicative of ovarian cancer and should be persistent in following up on symptoms that do not resolve.