Assessing Completeness of Cancer Treatment Data from an Academic Medical Center's Tumor Registry Through Comparison to the Central Registry.

Background: Researchers often rely on hospital tumor registry data to provide comprehensive cancer therapy information. The purpose of this study was to determine the completeness of treatment information found in the abstracted records of patients seen at an academic medical center located in a rural Midwestern state. Approach: The cohort included 846 Iowa residents diagnosed with a single malignant tumor of the female breast, colon/rectum, lung, pancreas, or prostate in 2017-2018 with an abstract recorded by the academic medical center and at least 1 other hospital. Treatment/no treatment agreement between the academic medical center's abstract and the central registry's consolidated abstract was examined for the following summary variables of the North American Association of Central Cancer Registries (NAACCR): surgery of the primary site, chemotherapy, radiation therapy, immunotherapy, and hormone therapy. Treatment summary variables from the academic medical center abstract that agreed with the corresponding variables from the central registry abstract were classified as concordant. The proportion of concordance for each treatment modality was the outcome measure, and 95% confidence intervals were calculated with the Agresti-Coull method. Concordance was also examined at the specific treatment level. Results: There was high concordance between the treatment information recorded in the academic medical center and the central registry records. The average proportion of treatment/no treatment agreement across all treatment modalities and cancer sites was 0.97 (SD, 0.02). Concordance remained high even when examining specific treatments (average concordance, 0.95; SD, 0.04). The lowest treatment/no treatment concordance proportion was 0.92 (95% CI, 0.86-0.96) for chemotherapeutic treatment of pancreatic cancer. We also found that the academic medical center's summary variables captured most treatments given at other facilities, ranging from 74.4% capture of immunotherapy to 88.2% capture of surgery of the primary site. Conclusions: These results indicate that NAACCR-formatted, summary variables from the academic medical center's tumor registry are likely to provide comprehensive treatment information for those individuals diagnosed or treated in this setting. Analyses of either the academic medical record registry records or consolidated records from the central registry should yield similar results. Future research should establish whether similar findings are obtained at other medical centers.

Impact of Surgeon Type and Rurality on Treatment and Survival of Ovarian Cancer Patients.

BACKGROUND: National Comprehensive Cancer Network guidelines recommend ovarian cancer patients receive cancer-directed surgery from a gynecologic oncologist surgeon. We aimed to determine if rurality impacts type of surgeon and estimate if the interaction between rurality and type of surgeon impacts cytoreductive surgery, chemotherapy initiation, and survival. METHODS: Our population-based cohort of Iowan (N=675) ovarian cancer patients included women diagnosed with histologically confirmed stages IB-IV cancer in 2010 to 2016 at the ages of 18 to 89 years old and who received cancer-directed surgery in Iowa. Multivariable logistic regression analysis and Cox proportional hazards models were used. RESULTS: Rural (vs. urban) patients were less likely to receive surgery from a gynecologic oncologist (adjusted odds ratio [OR]: 0.48; 95% confidence interval [CI]: 0.30-0.78). Rural patients with a gynecologic oncologist (vs. nongynecologic oncologist) surgeon were more likely to receive cytoreduction (OR: 2.84; 95% CI: 1.31-6.14) and chemotherapy (OR: 4.22; 95% CI: 1.82-9.78). Gynecologic oncologist-provided surgery conferred a 3-year cause-specific survival advantage among rural patients (adjusted hazard ratio: 0.57; 95% CI: 0.33-0.97) and disadvantage among urban patients (hazard ratio: 1.77; 95% CI: 1.02-3.06) in the model without treatment covariates. Significance dissipated in models with treatment variables. DISCUSSION: The variation in the gynecologic oncologist survival advantage may be because of treatment, referral, volume, or nongynecologic oncologist surgeons' specialty difference by rurality. This is the first study to investigate the ovarian cancer survival advantage of having a gynecologic oncologist surgeon by rurality.

A Midwest Tri-State Study of Overall Survival in Ovarian Cancer with Adjuvant Chemotherapy.

BACKGROUND: Overall survival associated with National Comprehensive Cancer Network (NCCN) adjuvant chemotherapy treatment guideline using population-based surveillance data is limited. This study examined overall survival and compliance to the NCCN guideline for adjuvant chemotherapy. METHODS: The Midwest Ovarian Cancer Study was a collaborative project between 3 state cancer registries (Iowa, Kansas, and Missouri), Westat, and the Centers for Disease Control and Prevention. A standardized protocol was used to ascertain International Federation of Gynecology and Obstetrics (FIGO) stage-specific adjuvant chemotherapy. Primary epithelial ovarian cancers with FIGO stages IA/IB grade 3, IC, and II-IV with histologies 8000-8576 and 8930-9110 were included in this study. The Kaplan-Meier method was used to calculate survival functions. Adjusted hazard ratio (HR) was analyzed for all-cause mortality associated with NCCN compliance with adjuvant chemotherapy after adjusting for stage at diagnosis and comorbidity. RESULTS: Sixtynine percent (523 of 756 eligible) were compliant with NCCN guidelines. Compliance was significantly different by age at diagnosis and insurance type (both P < .0001). The overall survival was significantly different by age group, census tract median income, histologic subtype, and tumor grade (all P < .0001). The adjusted HR of noncompliance with adjuvant chemotherapy guideline was 3.2 (95% CI, 2.600-3.911). CONCLUSIONS: Better overall survival in patients who had received NCCN-recommended adjuvant chemotherapy was confirmed. IMPACT: The survival benefit was 7% higher over 4 years after diagnosis when considering FIGO stage-specific chemotherapy and the corresponding number of cycles. Using the chemotherapy data field that is collected by statewide cancer registries underestimated the overall survival.

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.

BACKGROUND: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI's Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. METHODS: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age-onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. RESULTS: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. CONCLUSIONS: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. IMPACT: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.

Are driver's licenses issued within 3 years of cancer diagnosis a valid source of BMI data?

PURPOSE: Overweight and obesity are risk factors for several cancers; however, population-based cancer registries do not routinely collect data on body mass index (BMI). This study evaluated the utility of supplementing cancer registry data with BMI data derived from driver's license records. METHODS: We linked self-reported height and weight data from driver's license records to directly measured values, obtained via medical record abstraction, in a sample of 712 adult Iowa residents with cancer diagnosed during 2007-2012. Matched BMI values were subjected to a comprehensive evaluation of quantitative and categorical measures of agreement between data sources. RESULTS: Driver's license issue dates preceded diagnosis dates in 60.7% of cases, with time lags ranging from 3.0 years pre-diagnosis to 2.9 years post-diagnosis. Statistical analysis of agreement between continuous BMI values and ordinal BMI categories yielded an overall intraclass correlation estimate of 0.79 (95% confidence interval [CI] 0.77, 0.82) and an overall weighted kappa estimate of 0.63 (95% CI 0.59, 0.68), respectively. Subgroup analyses indicated reduced reliability among obesity-related cancers, particularly multiple myeloma, ovarian cancer, and pancreatic cancer. Neither measurement order nor time lag significantly affected agreement between BMI values. CONCLUSIONS: These findings suggest that self-reported driver's license data provide a reasonable approximation of BMI, but are less precise than interview- and questionnaire-based methods. Furthermore, the degree of bias is seemingly unaffected by measurement order and time lag, but appears to become more pronounced as BMI itself increases.

Guideline-Recommended Chemoradiation for Patients With Rectal Cancer at Large Hospitals: A Trend in the Right Direction.

BACKGROUND: Many patients with rectal cancer are treated at small, low-volume hospitals despite evidence that better outcomes are associated with larger, high-volume hospitals. OBJECTIVES: This study aims to examine trends of patients with rectal cancer who are receiving care at large hospitals, to determine the patient characteristics associated with treatment at large hospitals, and to assess the relationships between treatment at large hospitals and guideline-recommended therapy. DESIGN: This study was a retrospective cohort analysis to assess trends in rectal cancer treatment. SETTINGS: Data from the National Cancer Institute's Surveillance, Epidemiology, and End Results Patterns of Care studies were used. PATIENTS: The study population consisted of adults diagnosed with stages II/III rectal cancer in 1990/1991, 1995, 2000, 2005, 2010, and 2015. MAIN OUTCOME MEASURES: The primary outcome was treatment at large hospitals (≥500 beds). The receipt of guideline-recommended preoperative chemoradiation therapy and postoperative chemotherapy was assessed for patients diagnosed in 2005+. RESULTS: Two thousand two hundred thirty-one patients were included. The proportion treated at large hospitals increased from 19% in 1990/1991 to 27% in 2015 (ptrend < 0.0001). Black race was associated with treatment at large hospitals (vs white) (OR, 1.73; 95% CI, 1.30-2.31), as was being 55 to 64 years of age (vs 75+), and diagnosis in 2015 (vs 1990/1991). Treatment in large hospitals was associated with twice the odds of preoperative chemoradiation, as well as younger age and diagnosis in 2010 or 2015 (vs 2005). LIMITATIONS: The study did not account for the change in the number of large hospitals over time. CONCLUSIONS: Results suggest that patients with rectal cancer are increasingly being treated in large hospitals where they receive more guideline-recommended therapy. Although this trend is promising, patients receiving care at larger, higher-volume facilities are still the minority. Initiatives increasing patient and provider awareness of benefits of specialized care, as well as increasing referrals to large centers may improve the use of recommended treatment and ultimately improve outcomes. See Video Abstract at http://links.lww.com/DCR/A994. QUIMIORRADIACIÓN RECOMENDADA EN GUÍAS PARA PACIENTES CON CÁNCER RECTAL EN HOSPITALES DE GRAN TAMAÑO: UNA TENDENCIA EN LA DIRECCIÓN CORRECTA: Muchos pacientes con cáncer rectal se tratan en hospitales pequeños y de bajo volumen a pesar de evidencia de que los mejores resultados se asocian con hospitales más grandes y de gran volumen. OBJETIVOS: Examinar las tendencias en los pacientes con cáncer rectal que reciben atención en hospitales de gran tamaño, determinar las características de los pacientes asociadas con el tratamiento en hospitales grandes y evaluar la relación entre el tratamiento en hospitales grandes y la terapia recomendada en guías. DISEÑO:: Este estudio fue un análisis de cohorte retrospectivo para evaluar las tendencias en el tratamiento del cáncer de recto. ESCENARIO: Se utilizaron datos de los estudios del programa Patrones de Atención, Vigilancia, Epidemiología y Resultados Finales (SEER) del Instituto Nacional de Cáncer (NIH). PACIENTES: La población de estudio consistió en adultos diagnosticados con cáncer rectal en estadio II / III en 1990/1991, 1995, 2000, 2005, 2010 y 2015. PRINCIPALES MEDIDAS DE RESULTADO: El resultado primario fue el tratamiento en hospitales grandes (≥500 camas). La recepción de quimiorradiación preoperatoria recomendada según las guías y la quimioterapia posoperatoria se evaluaron para los pacientes diagnosticados en 2005 y posteriormente. RESULTADOS: Se incluyeron 2,231 pacientes. La proporción tratada en los hospitales grandes aumentó del 19% en 1990/1991 al 27% en 2015 (ptrend < 0.0001). La raza afroamericana se asoció con el tratamiento en hospitales grandes (vs. blanca) (OR, 1.73; IC 95%, 1.30-2.31), al igual que 55-64 años de edad (vs ≥75) y diagnóstico en 2015 (vs 1990/1991). El tratamiento en los hospitales grandes se asoció con el doble de probabilidad de quimiorradiación preoperatoria, así como con una edad más temprana y diagnóstico en 2010 o 2015 (vs 2005). LIMITACIONES: El estudio no tomó en cuenta el cambio en el número de hospitales grandes a lo largo del tiempo. CONCLUSIONES: Los resultados sugieren que los pacientes con cáncer rectal reciben cada vez más tratamiento en hospitales grandes donde reciben terapia recomendada por las guías mas frecuentemente. Aunque esta tendencia es prometedora, los pacientes que reciben atención en hospitales más grandes y de mayor volumen siguen siendo una minoría. Las iniciativas que aumenten la concientización del paciente y del proveedor de servicios médicos sobre los beneficios de la atención especializada, así como el aumento de las referencias a centros grandes podrían mejorar el uso del tratamiento recomendado y, en última instancia, mejorar los resultados. Vea el Resumen en video en http://links.lww.com/DCR/A994.

Use of appropriate initial treatment among adolescents and young adults with cancer.

BACKGROUND: There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. METHODS: We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. RESULTS: Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). CONCLUSIONS: Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery.

Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.

INTRODUCTION: Cancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes. METHODS: Individuals diagnosed in 2007-08 and age 15-39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed. RESULTS: 525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p < 0.01), Hispanics and non-Hispanic blacks (p < 0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey. DISCUSSION: Despite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Achieving a reasonable response rate in this population is possible, but requires extensive resources.

Quality of life in long-term survivors of bladder cancer.

BACKGROUND: The quality of life (QOL) of long-term survivors of bladder cancer in a population-based registry was assessed. METHODS: The Functional Assessment of Cancer Therapy (FACT-BL) instrument was used to evaluate QOL in a population-based sample of bladder cancer patients. QOL scores were compared between those undergoing radical cystectomy (RC) or those with an intact bladder (BI) and between continent and conduit urinary diversion groups. The influence of current age and time since diagnosis of cancer on QOL were also examined. Multivariate regression analyses were performed to examine the influence of age, time since diagnosis, current condition, treatment, stage of cancer, and comorbid conditions on QOL. RESULTS: A total of 259 patients participated in the study who had undergone RC (n=82) or other therapy (BI) (n=177). There were no differences in general QOL scores between RC and BI groups and between the 2 urinary diversion groups, but patients undergoing RC had worse sexual function scores. QOL scores for BI patients tended to decrease with increasing age (P=.01). Presence of comorbid conditions lowered QOL (P<.05). CONCLUSIONS: General QOL does not vary among long-term bladder cancer survivors regardless of treatment, but sexual functioning can be adversely affected in those undergoing cystectomy. Long-term QOL declines even in those with intact bladders, particularly in those with comorbidities.

Geocoding in cancer research: a review.

There is now widespread agreement that geographic identifiers (geocodes) should be assigned to cancer records, but little agreement on their form and how they should be assigned, reported, and used. This paper reviews geocoding practice in relation to major purposes and discusses methods to improve the accuracy of geocoded cancer data. Differences in geocoding methods and materials introduce errors of commission and omission into geocoded data. A common source of error comes from the practice of using digital boundary files of dubious quality to place addresses into areas of interest. Geocoded data are linked to demographic, environmental, and health services data, and each data type has unique accuracy considerations. In health services applications, the accuracy of distances computed from geocodes can differ markedly. Privacy and confidentiality issues are important in the use and release of geocoded cancer data. When masking methods are used for disclosure limitation purposes, statistical methods must be adjusted for the locational uncertainty of geocoded data. We conclude that selection of one particular type of geographic area as the geocode may unnecessarily constrain future work. Therefore, the longitude and latitude of each case is the superior basic geocode; all other geocodes of interest can be constructed from this basic identifier.

Self-report by elderly breast cancer patients was an acceptable alternative to surveillance, epidemiology, and end results (SEER) abstract data.

BACKGROUND AND OBJECTIVES: The purpose of this study was to compare breast cancer patients' self-report and surveillance, epidemiology, and end results (SEER) abstract data regarding type of treatment received (radiation, chemotherapy, and hormonal therapies). METHODS AND DESIGN: Patients 65 years of age or older diagnosed during 1999-2001 with stage I-II breast cancer and treated with conserving surgery were identified from the Iowa SEER registry; 307 (41% of those eligible) completed telephone interviews. SEER-registry abstract data also were obtained. RESULTS: Agreement between self-reports and SEER data varied by type of treatment, with almost perfect agreement for chemotherapy (kappa = 0.93) and moderate to substantial agreement for ever use of hormonal therapy (kappa = 0.61), receipt of radiation therapy (kappa = 0.60), and current use of hormonal therapy (kappa = 0.54). If the SEER data are assumed to be the "gold standard," the sensitivity was generally high (>87%) for all types of treatment. Specificity varied according to type of treatment: highest for chemotherapy (98.4%) and lowest for radiation therapy (49.0%). Predictive values positive and negative were above 75% across type of treatment. CONCLUSION: Using self-reported data was an acceptable alternative to reviewing medical records for documenting some types of breast cancer treatment.

Adult cancer survivors: how are they faring?

This study identified the psychosocial problems that 752 patients from 3 states who had been diagnosed with 1 of the 10 most commonly occurring cancers indicated concerned them the most. Approximately 1 year after being diagnosed with cancer, 68.1% of patients were concerned with their illness returning, and more than half were concerned with developing a disease recurrence (59.8%) or had fears regarding the future (57.7%). In addition to these psychological problems focused on fear, approximately two-thirds (67.1%) of patients were concerned about a physical health problem, fatigue, and loss of strength. Two other physical health problems that concerned more than two-fifths of patients were sleep difficulties (47.9%) and sexual dysfunction (41.2%). More problems were reported by younger survivors (ages 18-54 yrs), women, nonwhites, those who were not married, and those with a household income of less than 20,000 US dollars a year. Those patients currently in treatment for cancer reported on average significantly more problems (P < 0.001) and on average had a higher Cancer Problems in Living Scale (CPILS) total score (P < 0.001) compared with those not currently in treatment. In a comparison of respondents with one of the four most common cancers, the most concerns regarding problems in living and highest mean CPILS scores were reported by those diagnosed with lung cancer, followed by survivors of breast cancer, colorectal cancer, and prostate cancer.