The quest for population-level cancer recurrence data; current deficiencies and targets for improvement.

BACKGROUND: Cancer recurrence is a critical outcome in cancer care. However, population-level recurrence information is currently unavailable. Tumor registries provide an opportunity to generate this information, but require major reform. Our objectives were to (1) determine causes for variability in collection of recurrence, and (2) identify targets for intervention. METHODS: On-site interviews and observations of tumor registry follow-up procedures were conducted at Commission on Cancer (CoC) accredited hospitals. Information regarding registry resources (caseload, staffing, chart availability), follow-up methods and perceived causes for difficulty in obtaining recurrence information was obtained. RESULTS: Seven NCI/academic, 5 comprehensive community and 2 community centers agreed to participate. Hospitals were inconsistent in their investigation of cancer recurrence, resulting in underreporting of rates of recurrence. Hospital characteristics, registry staffing, staff qualifications and medical chart access influenced follow-up practices. Coding standards and definitions for recurrence were suboptimal, resulting in hospital variability of recurrence reporting. Finally, inability to identify cases lost to follow-up in collected data prevents accurate analysis of recurrence rates. CONCLUSION: Tumor registries collect varying degrees of recurrence information and provide the underpinnings to capture population-level cancer recurrence data. Targets for intervention are listed, and provide a roadmap to obtain this critical information in cancer care.

Relationships among primary tumor size, number of involved nodes, and survival for 8044 cases of Merkel cell carcinoma.

BACKGROUND: The effects of primary tumor size on nodal involvement and of number of involved nodes on survival have not, to our knowledge, been examined in a national database of Merkel cell carcinoma (MCC). OBJECTIVE: We sought to analyze a retrospective cohort of patients with MCC from the largest US national database to assess the relationships between these clinical parameters and survival. METHODS: A total of 8044 MCC cases in the National Cancer Data Base were analyzed. RESULTS: There was a 14% risk of regional nodal involvement for 0.5-cm tumors that increased to 25% for 1.7-cm (median-sized) tumors and to more than 36% for tumors 6 cm or larger. The number of involved nodes was strongly predictive of survival (0 nodes, 76% 5-year relative survival; 1 node, 50%; 2 nodes, 47%; 3-5 nodes, 42%; and ≥6 nodes, 24%; P < .0001 for trend). Younger and/or male patients were more likely to undergo pathological nodal evaluation. LIMITATIONS: The National Cancer Data Base does not capture disease-specific survival. Hence, relative survival was calculated by comparing overall survival with age- and sex-matched US population data. CONCLUSION: Pathologic nodal evaluation should be considered even for patients with small primary MCC tumors. The number of involved nodes is strongly predictive of survival and may help improve prognostic accuracy and management.

Comparison of cases captured in the national cancer data base with those in population-based central cancer registries.

BACKGROUND: The National Cancer Data Base (NCDB) is a large, geographically diverse hospital-based cancer registry that has been used to study factors related to cancer diagnosis, treatment, and survival. The primary purpose of this study was to compare the case counts and characteristics of patients in NCDB with population-based registries reported in the United States Cancer Statistics (USCS). METHODS: Cancer case counts from NCDB were compared to case counts from USCS to measure NCDB's case coverage, or the percentage of cases captured. Case coverage was examined by a variety of characteristics, including state of residence, race/ethnicity, age, and primary cancer site. RESULTS: The overall NCDB case coverage was 67.4 %, ranging from a high of 88.7 % for Delaware to a low of 27.1 % for Arizona. Case coverage for white, black, and Asian/Pacific Islander cases was high (64.7 % to 67.4 %), but it was much lower for American Indians/Alaskan Natives (32.8 %) and those of Hispanic ethnicity (51.1 %). Among the elderly (aged 65 + years), case coverage is much lower compared to persons younger than 65 (63.0 % and 73.0 %, respectively). Case coverage also varied widely by site, with the highest being cervix (77.9 %) and the lowest being melanoma (50.6 %). CONCLUSIONS: This study highlights the geographic- and site-specific variation in NCDB case coverage, primarily as a result of NCDB facility presence and data collection and processing protocols. These findings illustrate the strengths and limitations of NCDB as a resource for nationwide data on cancer diagnosis, treatment, and survival.

Pathologic nodal evaluation improves prognostic accuracy in Merkel cell carcinoma: analysis of 5823 cases as the basis of the first consensus staging system.

BACKGROUND: The management of Merkel cell carcinoma (MCC) has been complicated by a lack of detailed prognostic data and by the presence of conflicting staging systems. OBJECTIVE: We sought to determine the prognostic significance of tumor size, clinical versus pathologic nodal evaluation, and extent of disease at presentation and thereby derive the first consensus staging/prognostic system for MCC. METHODS: A total of 5823 prospectively enrolled MCC cases from the National Cancer Data Base had follow-up data (median 64 months) and were used for prognostic analyses. RESULTS: At 5 years, overall survival was 40% and relative survival (compared with age- and sex-matched population data) was 54%. Among all MCC cases, 66% presented with local, 27% with nodal, and 7% with distant metastatic disease. For cases presenting with local disease only, smaller tumor size was associated with better survival (stage I, ≤2 cm, 66% relative survival at 5 years; stage II, >2 cm, 51%; P < .0001). Patients with clinically local-only disease and pathologically proven negative nodes had better outcome (76% at 5 years) than those who only underwent clinical nodal evaluation (59%, P < .0001). LIMITATIONS: The National Cancer Data Base does not capture disease-specific survival. Overall survival for patients with MCC was therefore used to calculate relative survival based on matched population data. CONCLUSION: Although the majority (68%) of patients with MCC in this nationwide cohort did not undergo pathologic nodal evaluation, this procedure may be indicated in many cases as it improves prognostic accuracy and has important treatment implications for those found to have microscopic nodal involvement.

Cutaneous melanoma in Asian-Americans.

BACKGROUND: There is little information available on melanoma in non-white populations. Our objective was to characterize melanoma in Asian-Americans (AsA) and compare patient demographics and tumor characteristics with the non-Hispanic White (NHW) population. METHODS: 483,050 cutaneous melanoma patients diagnosed between 1986 and 2005 were identified using the National Cancer Data Base (NCDB); 1,237 were AsA, and 409,564 were NHW. Age, gender, site, histologic type, tumor thickness, AJCC stage, and survival were compared. RESULTS: AsA were more likely to be diagnosed with acral lentiginous tumors (6.7%) than NHW (0.8%, P < 0.001). A greater proportion of AsA were diagnosed with T4 tumors (15.6%) than NHW (8.5%, P < 0.001). AsA presented with fewer early stage I-II tumors and more late stage III-IV tumors than NHW (P < 0.001). Survival was similar for AsA and NHW. CONCLUSIONS: This is the largest study to date on melanoma in AsA. Compared to NHW, AsA are more likely to have acral lentinginous tumors, thick tumors, and higher stage. Despite this, their survival is similar to the NHW population.

Scoping it out: A change in sentinel lymph node surgery coding practice.

Recently, a committee of clinicians noted that registry data regarding the Scope of Regional Lymph Node Surgery did not match the expected standards of clinical practice. Review of data from their own registries led them to the conclusion that much of the problem lay not in clinical practice or in registry coding, but in the coding instructions themselves. In particular, the existing instructions for this surgery did not make clear that coding should be based on the operative report rather than the pathology report. As a result, the instructions failed to give adequate guidance for distinguishing sentinel lymph node biopsies from regional lymph node dissections where multiple nodes were removed. In addition, somewhat separately from these issues, the problem of coding multiple surgeries to show the cumulative effect of the surgery contributed to the miscoding of Scope of Regional Lymph Node Surgery. This article describes the Commission on Cancer's (CoC) exploration of the problem through a field test, and provides background for the changes in coding instructions introduced for use beginning with cases diagnosed in 2012.

New class of case definitions implemented by the American College of Surgeons in 2010.

The Commission on Cancer of the American College of Surgeons expanded its Class of Case data item in 2010 for additional flexibility. This article provides an overview of the revised categories and defines the key terms used to distinguish them.

Validating tumor linkage using the NAACCR site pairs table.

The objective of this study is to illustrate use of the Site Pairs Table developed by the North American Association of Central Cancer Registries (NAACCR) Record Linkage Work Group to validate tumor linkage in a central registry database and to identify potential cases with inaccurate tumor linkage. Central registries often receive reports for patients with multiple tumors, and they receive multiple reports from different sources for the same tumor. Tumor site pairs (pairs of unique tumors for patients with multiple tumors) ought not refer to the same tumor as represented in the Site Pairs Table. Likewise, abstract pairs (pairs of abstracts relating to the same tumor) ought to be identified during the tumor linkage process as belonging to the same tumor. Three central cancer registries represented on the work group contributed data to the study. The data included cases diagnosed 1992-2003 and represented 143,288 patients with multiple tumors and 280,227 tumors with multiple abstracts. Totals of 181,118 tumor site pairs and 391,670 abstract site pairs were generated from the data and compared to the Site Pairs Table. Of the abstract site pairs 381,389 (97.4%) were found in the Site Pairs Table. One registry reviewed its portion of the 2.6% not found in the table and determined 12% of the cases were incorrectly linked and should change from one tumor to two tumors. Of the tumor site pairs, 144,793 (80%) were not found in the Site Pairs Table. Further evaluation of the remaining 20% by paired site and laterality, histology and timing showed 19.3% were considered unique tumors and 0.7% were identified as potential cases with inaccurate tumor linkage. Two registries reviewed their portion of these cases. One registry changed two tumors to one tumor on 44% of the cases they reviewed. The other registry changed two tumors to one tumor on 53% of the cases they reviewed. Analyzing site pairs within the registry database using the Site Pairs Table assists in identifying inaccurate tumor linkages as was shown in this study.

The use of adjuvant radiation therapy in patients with intermediate-risk Stages IC and II uterine corpus cancer: a patient care evaluation study from the American College of Surgeons National Cancer Data Base.

OBJECTIVE: To determine the outcomes of patients with intermediate-risk Stages IC and II uterine corpus cancer treated with surgery alone or surgery followed by radiation therapy. METHODS: Patients with uterine corpus cancer diagnosed in 1995 were identified from hospitals in the United States with tumor registry databases. Data were collected on histology, surgical treatment, radiation therapy, recurrence, and survival. Survival analysis was performed using life-table computational method. RESULTS: 713 hospitals submitted data on 10,726 patients with uterine corpus cancer. 9977 patients (93.0%) underwent surgery, and 2624 patients (26.3%) received radiation therapy. Patients with clinical Stages IC and IIA disease who underwent surgery followed by radiation therapy compared to surgery alone had a trend toward improved 5-year relative survival (RS) (81.2% vs. 92.5%; 74.3% vs. 96.0%, respectively). The 5-year RS of patients with surgical Stage IC disease was not statistically different between the surgery alone group and the radiation group (93.9% vs. 91.7%). Patients with surgical Stage IIA and IIB disease did not benefit from radiation therapy compared to surgery alone (5-year RS; 83.7% vs. 98.0% and 82.3% vs. 81.8%, respectively). CONCLUSION: There is a trend toward improved survival in patients with clinical Stages IC and IIA uterine corpus cancer when radiation therapy is utilized following surgery. The survival of patients with surgical Stages IC and II uterine corpus cancer is not improved with adjuvant radiation therapy.