Rationale, Procedures, and Response Rates for a Pilot Study to Sample Cancer Survivors for NCI's Health Information National Trends Survey: HINTS-SEER 2021.

The National Cancer Institute's (NCI) Health Information National Trends Survey (HINTS) is a nationally representative survey of U.S. adults in which 12-17% of respondents report a cancer history. To increase representation from adult cancer survivors, in 2021, NCI sampled survivors from three Surveillance, Epidemiology, and End Results (SEER) program cancer registries: Iowa, New Mexico, and the Greater Bay Area. Sampling frames were stratified by time since diagnosis and race/ethnicity, with nonmalignant tumors and non-melanoma skin cancers excluded. Participants completed a self-administered postal questionnaire. The overall response rate for HINTS-SEER (N = 1,234) was 12.6%; a non-response bias analysis indicated few demographic differences between respondents and the pool of sampled patients in each registry. Most of the sample was 10+ years since diagnosis (n = 722; 60.2%); 392 respondents were 5 to < 10 years since diagnosis (29.6%); and 120 were < 5 years since diagnosis (10.2%). Common cancers included male reproductive (n = 304; 24.6%), female breast (n = 284; 23.0%), melanoma (n = 119; 9.6%), and gastrointestinal (n = 106; 8.6%). Tumors were mostly localized (67.8%; n = 833), with 22.4% (n = 282) regional, 6.2% (n = 72) distant, and 3.7% (n = 47) unknown. HINTS-SEER data are available by request and may be used for secondary analyses to examine a range of social, behavioral, and healthcare outcomes among cancer survivors.

Citizen science to improve patient and public involvement in GUideline Implementation in oral health and DEntistry (the GUIDE platform).

BACKGROUND: Citizen science is a way to democratise science by involving groups of citizens in the research process. Clinical guidelines are used to improve practice, but their implementation can be limited. Involving patients and the public can enhance guideline implementation, but there is uncertainty about the best approaches to achieve this. Citizen science is a potential way to involve patients and the public in improving clinical guideline implementation. We aimed to explore the application of citizen science methods to involve patients and the public in the dissemination and implementation of clinical guidelines in oral health and dentistry. METHODS: We developed GUIDE (GUideline Implementation in oral health and DEntistry), a citizen science online platform, using a participatory approach with researchers, oral health professionals, guideline developers and citizens. Recruitment was conducted exclusively online. The platform focused on prespecified challenges related to oral health assessment guidelines, and asked citizens to generate ideas, as well as vote and comment on other citizens' ideas to improve those challenges. Citizens also shared their views via surveys and two online synchronous group meetings. Data were collected on participant's demographics, platform engagement and experience of taking part. The most promising idea category was identified by an advisory group based on engagement, feasibility and relevance. We presented quantitative data using descriptive statistics and analysed qualitative data using inductive and deductive thematic analysis. RESULTS: The platform was open for 6 months and we recruited 189 citizens, from which over 90 citizens actively engaged with the platform. Most citizens were over 34 years (64%), female (58%) and had a university degree (50%). They generated 128 ideas, 146 comments and 248 votes. The challenge that led to most engagement was related to prevention and oral health self-care. To take this challenge forward, citizens generated a further 36 ideas to improve a pre-existing National Health Service oral care prevention leaflet. Citizens discussed motivations to take part in the platform (understanding, values, self-care), reasons to stay engaged (communication and feedback, outputs and impact, and relevance of topics discussed) and suggestions to improve future platforms. CONCLUSION: Citizen science is an effective approach to generate and prioritise ideas from a group of citizens to improve oral health and dental services. Prevention and oral health self-care were of particular interest to citizens. More research is needed to ensure recruitment of a diverse group of citizens and to improve retention in citizen science projects. PATIENT OR PUBLIC CONTRIBUTION: This project was inherently conducted with the input of public partners (citizen scientists) in all key aspects of its conduct and interpretation. In addition, two public partners were part of the research team and contributed to the design of the project, as well as key decisions related to its conduct, analysis, interpretation and dissemination and are co-authors of this manuscript.

Gynecologic oncologist impact on adjuvant chemotherapy care for stage II-IV ovarian cancer patients.

OBJECTIVE: We aim to evaluate the impact gynecologic oncologists have on ovarian cancer adjuvant chemotherapy care from their role as surgeons recommending adjuvant chemotherapy care and their role as adjuvant chemotherapy providers while considering rural-urban differences. METHODS: Multivariable adjusted logistic regressions and Cox proportional hazards models were developed using a population-based, retrospective cohort of stage II-IV and unknown stage ovarian cancer patients diagnosed in Iowa, Kansas, and Missouri in 2010-2012 whose medical records were abstracted in 2017-2018. RESULTS: Gynecologic oncologist surgeons (versus other type of surgeon) were associated with increased odds of adjuvant chemotherapy initiation (adjusted odds ratio (OR) 2.18; 95% confidence interval (CI) 1.10-4.33) and having a gynecologic oncologist adjuvant chemotherapy provider (OR 10.0; 95% CI 4.58-21.8). Independent of type of surgeon, rural patients were less likely to have a gynecologic oncologist chemotherapy provider (OR 0.52; 95% CI 0.30-0.91). Gynecologic oncologist adjuvant chemotherapy providers (versus other providers) were associated with decreased surgery-to-chemotherapy time (rural: 6 days; urban: 8 days) and increased distance to chemotherapy (rural: 22 miles; urban: 11 miles). Rural women (versus urban) traveled 38 miles farther when their chemotherapy provider was a gynecologic oncologist and 27 miles farther when it was not. CONCLUSION: Gynecologic oncologist surgeons may impact adjuvant chemotherapy initiation. Gynecologic oncologists serving as adjuvant chemotherapy providers were associated with some care benefits, such as reduced time from surgery-to-chemotherapy, and some care barriers, such as travel distance. The barriers and benefits of having a gynecologic oncologist involved in adjuvant chemotherapy care, including rural-urban differences, warrant further research in other populations.

Rural disparities in surgical care from gynecologic oncologists among Midwestern ovarian cancer patients.

OBJECTIVE: Up to one-third of women with ovarian cancer in the United States do not receive surgical care from a gynecologic oncologist specialist despite guideline recommendations. We aim to investigate the impact of rurality on receiving surgical care from a specialist, referral to a specialist, and specialist surgery after referral, and the consequences of specialist care. METHODS: We utilized a retrospective cohort created through an extension of standard cancer surveillance in three Midwestern states. Multivariable adjusted logistic regression was utilized to assess gynecologic oncologist treatment of women 18-89 years old, who were diagnosed with primary, histologically confirmed, malignant ovarian cancer in 2010-2012 in Kansas, Missouri and Iowa by rurality. RESULTS: Rural women were significantly less likely to receive surgical care from a gynecologic oncologist specialist (adjusted odds ratio (OR) 0.37, 95% confidence interval (CI) 0.24-0.58) and referral to a specialist (OR 0.37, 95% CI 0.23-0.59) compared to urban women. There was no significant difference in specialist surgery after a referral (OR 0.56, 95% CI 0.26-1.20). Rural women treated surgically by a gynecologic oncologist versus non-specialist were more likely to receive cytoreduction and more complete tumor removal to ≤1 cm. CONCLUSION: There is a large rural-urban difference in receipt of ovarian cancer surgery from a gynecologic oncologist specialist (versus a non-specialist). Disparities in referral rates contribute to the rural-urban difference. Further research will help define the causes of referral disparities, as well as promising strategies to address them.

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.

A crucial role for ß2 integrins in podosome formation, dynamics and Toll-like-receptor-signaled disassembly in dendritic cells.

The dynamic properties of podosomes, their ability to degrade the underlying matrix and their modulation by Toll-like receptor (TLR) signaling in dendritic cells (DCs) suggests they have an important role in migration. Integrins are thought to participate in formation and dynamics of podosomes but the multiplicity of integrins in podosomes has made this difficult to assess. We report that murine DCs that lack ß2 integrins fail to form podosomes. Re-expression of ß2 integrins restored podosomes but not when the membrane proximal or distal NPxF motifs, or when an intervening triplet of threonine residues were mutated. We show that ß2 integrins are remarkably long-lived in podosome clusters and form a persistent framework that hosts multiple actin-core-formation events at the same or adjacent sites. When ß2 integrin amino acid residues 745 or 756 were mutated from Ser to Ala, podosomes became resistant to dissolution mediated through TLR signaling. TLR signaling did not detectably modulate phosphorylation at these sites but mutation of either residue to phospho-mimetic Asp increased ß2 integrin turnover in podosomes, indicating that phosphorylation at one or both sites establishes permissive conditions for TLR-signaled podosome disassembly.

Sustainable oral healthcare: what is it and how do we achieve it?

In recent years, there has been an increase in interest in what environmental sustainability means for healthcare, including oral health and dentistry. To help facilitate discussions among key stakeholders in this area, the Scottish Dental Clinical Effectiveness Programme held a workshop in November 2022. The purpose of this workshop was to explore current thinking on the subject of sustainability as it relates to oral health and to help stakeholders identify how to engage with the sustainability agenda. This paper presents an overview of the presentations and discussions from the workshop and highlights potential avenues for future work and collaboration.

The practices and beliefs of dental professionals regarding the management of patients taking anticoagulant and antiplatelet drugs.

AIM: This study aimed to inform the implementation of the updated Scottish Dental Clinical Effectiveness Programme (SDCEP) guidance, 'Management of Dental Patients taking Anticoagulant or Antiplatelet Drugs', and to determine training needs by investigating dental professionals' current practice and beliefs regarding management of patients taking these medications. METHODS: Dental professionals were recruited via the NHS Education for Scotland Portal. The online questionnaire collected demographic information, data on current practice and information about beliefs regarding behaviours related to the management of patients on anticoagulant or antiplatelet medication. Quantitative data were analysed using SPSS and subjected to frequency calculations, t-tests, one-way ANOVA and linear regression. Qualitative data were collected via free text boxes and analysed using thematic analysis. RESULTS: One hundred and fifty-seven participants responded to the questionnaire. The majority of respondents stated they were aware of the guidance and always based their practice on it. The majority of respondents always assessed the patient's individual bleeding risk prior to dental procedures. Most respondents felt that they did not know how to appropriately manage patients taking low doses of low molecular weight heparins (LMWH), and only 38% of respondents always followed SDCEP guidance about direct oral anticoagulants (DOAC) medication and procedures with a low associated risk of bleeding. DISCUSSION: This study demonstrates a need for further educational support surrounding LMWHs and management of patients on DOAC medication. Time and remuneration represent barriers to guidance implementation in primary care. CONCLUSION: There is good awareness and adherence to the guidance in primary care settings, however training needs were identified to support implementation.

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.

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.

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.

Proximal effects of Toll-like receptor activation in dendritic cells.

Toll-like receptor (TLR) signals induce dendritic cell (DC) differentiation and influence the immunological outcome of their interactions with T cells. Recent in vitro studies demonstrate that TLR signals also trigger striking reorganisation of the DC vacuolar compartments, the cytoskeleton and the machinery of protein translation and turnover. Moreover, TLR ligation within endosomes and phagosomes appears to establish organelle autonomous signals. These changes, which mostly occur within minutes to a few hours after TLR engagement, are adaptations relevant to the antigen capture, processing and migratory phases of the DC life history.

Patient and Provider Perspectives on Barriers to Accessing Gynecologic Oncologists for Ovarian Cancer Surgical Care.

Objective: National Comprehensive Cancer Network (NCCN) guidelines recommend that patients with ovarian cancer receive surgical care from a gynecologic oncologist. However, 15%-30% of patients with ovarian cancer do not receive surgical care from this specialist. The reasons for this remain unknown. We aim at assessing the barriers and attitudes perceived by patients with ovarian cancer who did not receive their primary surgery from a gynecologic oncologist and by diagnosing providers in an exploratory qualitative study. Materials and Methods: Patients and providers were sampled through the Iowa Cancer Registry. Participants were interviewed by telephone about barriers that patients face receiving surgical care from a specialist. Interviews were transcribed verbatim, and thematic analysis was completed by two team members. Findings: Providers (n = 10, 13% participation rate) identified many system-level barriers, including poor provider-to-provider communication, long time-to-surgery wait times, and a limited number of gynecologic oncologists working in their referral range. Patients (n = 16, 38% participation rate) denied system-level barriers; however, no patients reported receiving a referral to a gynecologic oncologist. This, in and of itself, constitutes a system-level barrier. Providers identified many barriers that their patients face, whereas patients failed to identify these barriers and denied facing them. Patients described the shock that they experienced after diagnosis and its limitations on their decision-making process. Both providers and patients agreed that the providers were influential in determining care decisions. Discussion: There is a divergence in the perceptions of barriers to care between providers and patients. Open discussions are needed about options and clinical guidelines for surgical ovarian cancer care. Further research is needed to develop and evaluate mechanisms to improve provider-to-patient discussions about surgical recommendations.

Impact of Rurality on Stage IV Ovarian Cancer at Diagnosis: A Midwest Cancer Registry Cohort Study.

PURPOSE: We aim to understand if rurality impacts patients' odds of presenting with stage IV ovarian cancer at diagnosis independent of distance to primary care provider and the socioeconomic status of a patient's residential census tract. METHODS: A cohort of 1,000 women with ovarian cancer in Iowa, Kansas, and Missouri were sampled and analyzed from the cancer registries' statewide population data. The sample contained those with a histologically confirmed primary ovarian cancer diagnosis in 2011-2012. All variables were captured through an extension of standard registry protocol using standardized definitions and abstraction manuals. Chi-square tests and a multivariable logistic regression model were used. FINDINGS: At diagnosis, 111 women in our sample had stage IV cancer and 889 had stage I-III. Compared to patients with stage I-III cancer, patients with stage IV disease had a higher average age, more comorbidities, and were more often living in rural areas. Multivariate analysis showed that rural women (vs metropolitan) had a greater odds of having stage IV ovarian cancer at diagnosis (odds ratio = 2.41 and 95% confidence interval = 1.33-4.39). CONCLUSION: Rural ovarian cancer patients have greater odds of having stage IV cancer at diagnosis in Midwestern states independent of the distance they lived from their primary care physician and the socioeconomic status of their residential census tract. Rural women's greater odds of stage IV cancer at diagnosis could affect treatment options and mortality. Further investigation is needed into reasons for these findings.

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.

Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study.

PURPOSE OF THE STUDY: Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown. PATIENTS AND METHODS: Questionnaire and medical record data from 515 AYA cancer patients (21 acute lymphocytic leukemia [ALL], 201 germ cell tumor, 141 Hodgkin lymphoma, 128 non-Hodgkin lymphoma, 24 sarcoma) from a population-based study were analyzed. We used multivariable models to determine characteristics associated with patient knowledge of the availability of clinical trials for their cancer. Reasons for not participating in a trial were tabulated. RESULTS: In total, 63% of patients reported not knowing whether a relevant clinical trial was available, 20% reported knowing that a clinical trial was not available, and 17% reported that a trial was available. Among patients reporting an available trial, 67% were recommended for enrollment. Knowing about the availability of clinical trials was associated with having ALL (odds ratio=2.9, 95% confidence interval=1.1, 7.8). Reporting that a clinical trial was available was positively associated with having ALL, Hodgkin lymphoma, non-Hodgkin lymphoma and sarcoma (relative to germ cell tumor) and working full-time or in school full-time (odds ratio=2.6, 95% confidence interval=1.0, 6.7). Concerns about involvement in research (57%) and problems accessing trials (21%) were the primary reasons cited for not enrolling among patients who knew that a trial was available. CONCLUSIONS: Improvement in AYA cancer patient clinical trial enrollment will require enhancing knowledge about trial availability and addressing this population's concerns about participating in medical research.

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.