Economic burden of skin cancer treatment in the USA: an analysis of the Medical Expenditure Panel Survey Data, 2012-2018.

PURPOSE: We report the prevalence and economic cost of skin cancer treatment compared to other cancers overall in the USA from 2012 to 2018. METHODS: Using the Medical Expenditure Panel Survey full-year consolidated data files and associated medical conditions and medical events files, we estimate the prevalence, total costs, and per-person costs of treatment for melanoma and non-melanoma skin cancer among adults aged ≥ 18 years in the USA. To understand the changes in treatment prevalence and treatment costs of skin cancer in the context of overall cancer treatment, we also estimate the prevalence, total costs, and per-person costs of treatment for non-skin cancer among US adults. RESULTS: During 2012-15 and 2016-18, the average annual number of adults treated for any skin cancer was 5.8 (95% CI: 5.2, 6.4) and 6.1 (95% CI: 5.6, 6.6) million, respectively, while the average annual number of adults treated for non-skin cancers rose from 10.8 (95% CI: 10.0, 11.5) to 11.9 (95% CI: 11.2, 12.6) million, respectively. The overall estimated annual costs rose from $8.0 (in 2012-2015) to $8.9 billion (in 2016-18) for skin cancer treatment and $70.2 to $79.4 billion respectively for non-skin cancer treatment. CONCLUSION: The prevalence and economic cost of skin cancer treatment modestly increased in recent years. Given the substantial cost of skin cancer treatment, continued public health attention to implementing evidence-based sun-safety interventions to reduce skin cancer risk may help prevent skin cancer and the associated treatment costs.

Preventive care use among Hispanic adults with limited comfort speaking English: An analysis of the Medical Expenditure Panel Survey data.

Language barriers have been associated with worse access to healthcare and poorer health outcomes. To assess differences in access to care and utilization of healthcare services between Hispanic adults and non-Hispanic white adults (NHW), we used the Medical Expenditure Panel Survey (2013-2016) to compare Hispanic adults who expressed limited comfort speaking in English (LCE) with Hispanic adults who were comfortable speaking in English (CE) and NHW adults. Hispanic adults with CE were less likely than NHW adults to have a usual source of care, use preventive services, including cervical cancer screening, and healthcare services. However, after adjustment breast and cervical cancer screening exceeded that of NHW adults. Hispanic adults with LCE fared substantially worse than their Hispanic counterparts with CE in having a usual source of care, use of preventive services, breast and colorectal cancer screening, and healthcare services. After adjustment, use of all cancer screening tests were similar. Eliminating disparities for Hispanic adults will require a multi-pronged approach to address access to healthcare and other social determinants of health, including poverty, employment discrimination, and educational inequities. The public health community can help improve health literacy, address barriers to care, and provide appropriate language assistance at point of care using culturally-competent means to promote greater utilization of preventive services, including demand for and delivery of cancer screenings.

Cost-effectiveness of patient navigation for breast cancer screening in the National Breast and Cervical Cancer Early Detection Program.

OBJECTIVES: Patient navigation (PN) services have been shown to improve cancer screening in disparate populations. This study estimates the cost-effectiveness of implementing PN services within the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). METHODS: We adapted a breast cancer simulation model to estimate a population cohort of women aged 40-64 years from the NBCCEDP through their lifetime. We incorporated their screening frequency and screening and diagnostic costs. RESULTS: Within the NBCCEDP, Program with PN (vs. No PN) resulted in a greater number of mammograms per woman (4.23 vs. 4.14), lower lifetime mortality from breast cancer (3.53% vs. 3.61%), and fewer missed diagnostic resolution per woman (0.017 vs. 0.025). The estimated incremental cost-effectiveness ratios for a Program with PN was $32,531 per quality-adjusted life-years relative to Program with No PN. CONCLUSIONS: Incorporating PN services within the NBCCEDP may be a cost-effective way of improving adherence to screening and diagnostic resolution for women who have abnormal results from screening mammography. Our study highlights the value of supportive services such as PN in improving the quality of care offered within the NBCCEDP.

Cost-effectiveness of breast cancer screening in the National Breast and Cervical Cancer Early Detection Program.

PURPOSE: To estimate the cost-effectiveness of breast cancer screening in the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). METHODS: Using a modified CISNET breast cancer simulation model, we estimated outcomes for women aged 40-64 years associated with three scenarios: breast cancer screening within the NBCCEDP, screening in the absence of the NBCCEDP (no program), and no screening through any program. We report screening outcomes, cost, quality-adjusted life-years (QALYs), incremental cost-effectiveness ratios (ICERs), and sensitivity analyses results. RESULTS: Compared with no program and no screening, the NBCCEDP lowers breast cancer mortality and improves QALYs, but raises health care costs. Base-case ICER for the program was $51,754/QALY versus no program and $50,223/QALY versus no screening. Probabilistic sensitivity analysis ICER for the program was $56,615/QALY [95% CI $24,069, $134,230/QALY] versus no program and $51,096/QALY gained [95% CI $26,423, $97,315/QALY] versus no screening. CONCLUSIONS: On average, breast cancer screening in the NBCCEDP was cost-effective compared with no program or no screening.

Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18-64 Years - United States, 2011-2016.

In the United States in 2019, an estimated 16.9 million persons are living after receiving a cancer diagnosis (1). These cancer survivors face many challenges, including functional limitations, serious psychological distress (2), and other lasting and late effects of cancer treatments. Because of the high cost of cancer therapy, many cancer survivors are more likely to face substantial out-of-pocket health care expenditures and financial hardship, compared with persons without a history of cancer (3,4). Out-of-pocket expenditures and financial hardship associated with cancer have been higher among survivors aged 18-64 years than they have been among older survivors (5). To estimate annual out-of-pocket expenditures and financial hardship among cancer survivors aged 18-64 years, compared with persons without a cancer history, CDC, the American Cancer Society, and the National Cancer Institute analyzed data from the 2011-2016 Medical Expenditure Panel Survey (MEPS).* The average annual out-of-pocket spending per person was significantly higher among cancer survivors ($1,000; 95% confidence interval [CI] = $886-$1,113) than among persons without a cancer history ($622; CI = $606-$639). Financial hardship was common; 25.3% of cancer survivors reported material hardship (e.g., problems paying medical bills), and 34.3% reported psychological hardship (e.g., worry about medical bills). These findings add to accumulating evidence documenting the financial difficulties of many cancer survivors. Mitigating the negative impact of cancer in the United States will require implementation of strategies aimed at alleviating the disproportionate financial hardship experienced by many survivors. These strategies include systematic screening for financial hardship at cancer diagnosis and throughout cancer care, integration of discussions about the potential for adverse financial consequences of treatments in shared treatment decision-making, and linkage of patients and survivors to available resources to ensure access to high-quality evidence-based care.

Preventive care service use among cancer survivors with serious psychological distress: An analysis of the medical expenditure panel survey data.

Serious psychological distress (SPD) can adversely impact health and quality of life after cancer. The purpose of this study is to examine the association between SPD and the receipt of preventive care services and cancer screening among survivors and adults without a cancer history. A total of 12,564 cancer survivors and 160,023 adults without a cancer history as comparison group were identified from the population-based Medical Expenditure Panel Survey (2008-2015). SPD was assessed using the 6-item Kessler Psychological Distress Scale. We examined use of preventive care and cancer screening services in cancer survivors and comparison adults with/without SPD. Multivariable logistic regression models were conducted for each outcome: preventive service (i.e. blood pressure, cholesterol, influenza vaccination, routine and dental check-up) or cancer screening (i.e. mammography, Papanicolau test, colorectal cancer screening) adjusting for demographic, comorbidity, usual source of care covariates. Adjusted odds ratios and 95% confidence intervals were calculated. Prevalence of SPD was 9.8% in cancer survivors compared to 4.6% in comparison adults. Survivors with SPD were more frequent utilizers of medical care, reporting 10 or more visits to the doctor's office in the past 12 months (29.3% vs. 14.1% without SPD). Having SPD was associated with lower odds of being up-to-date with preventive service use and cancer screening among age- and gender-eligible individuals. The magnitude of the effect was greater in adults' age ≥65 years. Better coordination of care and patient-physician discussions are likely needed to improve delivery of recommended preventive services for persons with SPD.

Primary Care Providers' Intended Use of Decision Aids for Prostate-Specific Antigen Testing for Prostate Cancer Screening.

Decision aids are tools intended to help people weigh the benefits and harms of a health decision. We examined primary care providers' perspective on use of decision aids and explored whether providers' beliefs and interest in use of a decision aid was associated with offering the prostate-specific antigen (PSA) test for early detection of prostate cancer. Data were obtained from 2016 DocStyles, an annual, web-based survey of U.S. healthcare professionals including primary care physicians (n = 1003) and nurse practitioners (n = 253). We found that the majority of primary care providers reported not using (patient) decision aids for prostate cancer screening, but were interested in learning about and incorporating these tools in their practice. Given the potential of decision aids to guide in informed decision-making, there is an opportunity for evaluating existing decision aids for prostate cancer screening for clinical use.

Estimating health benefits and cost-savings for achieving the Healthy People 2020 objective of reducing invasive colorectal cancer.

This study aims to quantify the aggregate potential life-years (LYs) saved and healthcare cost-savings if the Healthy People 2020 objective were met to reduce invasive colorectal cancer (CRC) incidence by 15%. We identified patients (n=886,380) diagnosed with invasive CRC between 2001 and 2011 from a nationally representative cancer dataset. We stratified these patients by sex, race/ethnicity, and age. Using these data and data from the 2001-2011 U.S. life tables, we estimated a survival function for each CRC group and the corresponding reference group and computed per-person LYs saved. We estimated per-person annual healthcare cost-savings using the 2008-2012 Medical Expenditure Panel Survey. We calculated aggregate LYs saved and cost-savings by multiplying the reduced number of CRC patients by the per-person LYs saved and lifetime healthcare cost-savings, respectively. We estimated an aggregate of 84,569 and 64,924 LYs saved for men and women, respectively, accounting for healthcare cost-savings of $329.3 and $294.2 million (in 2013$), respectively. Per person, we estimated 6.3 potential LYs saved related to those who developed CRC for both men and women, and healthcare cost-savings of $24,000 for men and $28,000 for women. Non-Hispanic whites and those aged 60-64 had the highest aggregate potential LYs saved and cost-savings. Achieving the HP2020 objective of reducing invasive CRC incidence by 15% by year 2020 would potentially save nearly 150,000 life-years and $624 million on healthcare costs.

Primary Care Physicians Beliefs about Prostate-Specific Antigen Evidence Uncertainty, Screening Efficacy, and Test Use.

BACKGROUND/PURPOSE: Little is known about primary care physicians' (PCPs) beliefs about prostate cancer screening efficacy, evidence uncertainty, and their actual screening behaviors. We examined factors associated with PCP beliefs about screening efficacy and uncertainty and whether beliefs were associated with prostate specific-antigen (PSA) test use. METHODS: The 2008 National Survey of Primary Care Physicians' Practices Regarding Prostate Cancer Screening collected information on physicians' attitudes, beliefs, and practices related to prostate cancer and screening (n=1,256). Two factors were constructed that measured belief in certainty of evidence for PSA testing and belief in screening efficacy. These factors, along with PCP sociodemographic and practice-related factors, were used to examine associations with offering the PSA test. RESULTS: Most PCPs were male (70%), Caucasian (76%), under age 50 (56%), and practiced in communities with more than 50,000 residents (54%). In bivariate analysis, variables associated with PCP belief in evidence uncertainty included female gender, younger age, and lower patient volume. Variables associated with belief in screening efficacy included older age and general and family practice specialty. After adjustment, PCPs with high belief in evidence uncertainty were less likely (OR=0.19, 95% CI=0.06, 0.62) to offer PSA and more likely to practice shared decision making (OR=1.80, 95% CI=1.22-2.67). PCPs with high belief in screening efficacy were more likely (OR=2.99, 95% CI=1.15, 7.77) to offer PSA and less likely to practice shared decision making (OR=0.47, 95% CI=0.32-0.70). CONCLUSION: Our data indicate that belief patterns about evidence uncertainty and the efficacy of using PSA may play a role in whether PCPs offer PSA.

Colon cancer survival in the United States by race and stage (2001-2009): Findings from the CONCORD-2 study.

BACKGROUND: In the first CONCORD study (2008), 5-year survival for patients diagnosed with colon cancer between 1990 and 1994 in the United States was among the highest in the world (60%), but there were large racial disparities in most participating states. The CONCORD-2 study (2015) enabled the examination of survival trends between 1995 and 2009 for US states by race and stage. METHODS: The authors analyzed data from 37 state population-based cancer registries, covering approximately 80% of the US population, for patients who were diagnosed with colon cancer between 2001 and 2009 and were followed through 2009. Survival up to 5 years was corrected for background mortality (net survival) using state-specific and race-specific life tables and age-standardized using the International Cancer Survival Standard weights. Survival is presented by race (all, black, white), stage, state, and calendar period (2001-2003 and 2004-2009) to account for changes in methods used to collect stage. RESULTS: Five-year net survival increased by 0.9%, from 63.7% between 2001 and 2003 to 64.6% between 2004 and 2009. More black than white patients were diagnosed with distant-stage disease between 2001 and 2003 (21.5% vs 17.2%) and between 2004 and 2009 (23.3% vs 18.8%). Survival improved for both blacks and whites, but 5-year net survival was 9-10% lower for blacks than for whites both between 2001 and 2003 (54.7% vs 64.5%) and between 2004 and 2009 (56.6% vs 65.4%). The absolute difference between blacks and whites decreased by only 1% during the decade. CONCLUSIONS: Five-year net survival from colon cancer increased slightly over time. Survival among blacks diagnosed between 2004 and 2009 had still not reached the level of that among whites diagnosed between 1990 and 1994, some 15 to 20 years earlier. These findings suggest a need for more targeted efforts to improve screening and to ensure timely, appropriate treatment, especially for blacks, to reduce this large and persistent disparity in survival. Cancer 2017;123:5014-36. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

Disparities in ovarian cancer survival in the United States (2001-2009): Findings from the CONCORD-2 study.

BACKGROUND: Ovarian cancer is the fifth leading cause of cancer death among women in the United States. This study reports ovarian cancer survival by state, race, and stage at diagnosis using data from the CONCORD-2 study, the largest and most geographically comprehensive, population-based survival study to date. METHODS: Data from women diagnosed with ovarian cancer between 2001 and 2009 from 37 states, covering 80% of the US population, were used in all analyses. Survival was estimated up to 5 years and was age standardized and adjusted for background mortality (net survival) using state-specific and race-specific life tables. RESULTS: Among the 172,849 ovarian cancers diagnosed between 2001 and 2009, more than one-half were diagnosed at distant stage. Five-year net survival was 39.6% between 2001 and 2003 and 41% between 2004 and 2009. Black women had consistently worse survival compared with white women (29.6% from 2001-2003 and 31.1% from 2004-2009), despite similar stage distributions. Stage-specific survival for all races combined between 2004 and 2009 was 86.4% for localized stage, 60.9% for regional stage, and 27.4% for distant stage. CONCLUSIONS: The current data demonstrate a large and persistent disparity in ovarian cancer survival among black women compared with white women in most states. Clinical and public health efforts that ensure all women who are diagnosed with ovarian cancer receive appropriate, guidelines-based treatment may help to decrease these disparities. Future research that focuses on the development of new methods or modalities to detect ovarian cancer at early stages, when survival is relatively high, will likely improve overall US ovarian cancer survival. Cancer 2017;123:5138-59. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

Values and worries of ovarian cancer patients.

INTRODUCTION: Older women with ovarian cancer (OC) are less likely to receive guideline concordant treatment. Differences in values and worries about treatment may explain why. METHODS: Women with OC in 2013-2015 were surveyed about values and worries at the time of initial treatment. Existing values (11 item, e.g., maintaining quality of life) and worries (12 items, e.g., treatment side effects) scales were adapted based on OC literature. Responses were very/somewhat/a little/not at all important or worried. Principal Component Analyses (PCA) identified groups of values and worries that best explained scales' variation. We examined proportions reporting very/somewhat important/worried on ≥1 item in each component by age (older ≥65years, younger <65years). RESULTS: Of 170 respondents, 42.3% were older. PCA components for values were: functional well-being (3 survey items, proportion of variance explained [PoVE] 26.3%), length of life and sexual functioning (3 items, PoVE 20.1%), attitudes (3 items, PoVE 14.2%), and not becoming a burden (2 items, PoVE 13.7%). PCA components for worries were: economic (4 items, PoVE 27.2%), uncertainty (6 items, PoVE 26.0%), and family impact (2 items, PoVE 16.3%). Older women were less likely to indicate very/somewhat worried to ≥1 item in the economic (51.4% vs 72.4%, p=0.006), uncertainty (80.6% vs. 98.0%, p=0.001), and family impact component (55.6% vs. 70.4%, p=0.03). No other age differences were found. CONCLUSIONS: While worry during OC treatment decision-making may differ across age groups, values do not. Research should assess how differences in worry might affect OC medical decision-making for older and younger women.

Prostate-specific antigen screening: An update of physician beliefs and practices.

PSA testing for early detection of prostate cancer decreased dramatically following the 2012 PSA screening recommendation against routine screening of asymptomatic men. In an assessment of the screening behaviors of primary care providers, the majority (61%) of family medicine and internal medicine practitioners who responded to a 2016 DocStyles online survey (608 of 1003) recommended prostate-specific antigen (PSA) testing based on individual risk or other factors, rather than routinely screening all men for prostate cancer.

The potential impact of reducing indoor tanning on melanoma prevention and treatment costs in the United States: An economic analysis.

BACKGROUND: Indoor tanning is associated with an increased risk of melanoma. The US Food and Drug Administration proposed prohibiting indoor tanning among minors younger than 18 years. OBJECTIVE: We sought to estimate the health and economic benefits of reducing indoor tanning in the United States. METHODS: We used a Markov model to estimate the expected number of melanoma cases and deaths averted, life-years saved, and melanoma treatment costs saved by reducing indoor tanning. We examined 5 scenarios: restricting indoor tanning among minors younger than 18 years, and reducing the prevalence by 20%, 50%, 80%, and 100%. RESULTS: Restricting indoor tanning among minors younger than 18 years was estimated to prevent 61,839 melanoma cases, prevent 6735 melanoma deaths, and save $342.9 million in treatment costs over the lifetime of the 61.2 million youth age 14 years or younger in the United States. The estimated health and economic benefits increased as indoor tanning was further reduced. LIMITATIONS: Limitations include the reliance on available data and not examining compliance to indoor tanning laws. CONCLUSIONS: Reducing indoor tanning has the potential to reduce melanoma incidence, mortality, and treatment costs. These findings help quantify and underscore the importance of continued efforts to reduce indoor tanning and prevent melanoma.

Analysis of the benefits and costs of a national campaign to promote colorectal cancer screening: CDC's screen for life-national colorectal cancer action campaign.

The Centers for Disease Control and Prevention's Screen for Life: National Colorectal Cancer Action Campaign (SFL) is one of the longest running national multimedia campaigns to promote colorectal cancer screening. Since its inception in 1999, no study has quantified the benefits and costs of SFL. We modeled the impact of SFL campaign on screening rates, assuming that the effect size would range from 0.5% to 10% of the unscreened population exposed to the campaign in the last 14 years. Given the estimated benefits of the campaign and costs, we calculated the cost per person screened (2012 dollars). We hypothesize that if 0.5% of the population exposed to campaign messages were screened for colorectal cancer, an additional 251,000 previously unscreened individuals would be screened. The average cost of SFL per person screened would be $2.44. On the other hand, if 10% of the population exposed to campaign messages were screened, an additional 5.01 million individuals would be screened. The average cost per person screened would be $0.12. Results indicate that SFL improves screening rates at a relatively low cost per person screened. The findings in this study provide an important starting point and benchmark for future research efforts to determine the benefits and costs of health communication campaigns to promote cancer prevention.

Human papillomavirus-associated anal squamous cell carcinoma: sociodemographic, geographic, and county-level economic trends in incidence rates-United States, 2001-2019.

BACKGROUND: Incidence of anal squamous cell carcinoma is increasing, but vaccination against human papillomavirus (HPV) and removal of precancerous anal lesions could prevent new cases. The overall HPV-associated cancer incidence is reported to be higher in rural populations and in counties with lower economic status. We assessed these differences specifically for HPV-associated anal squamous cell carcinoma and described the geographic, county-level economic, and sociodemographic variations in incidence rates and trends. METHODS: We analyzed data from the US Cancer Statistics to assess age-standardized incidence rates of HPV-associated squamous cell carcinomas among adults aged 18 years and older from 2001 to 2019. We calculated rate ratios and 95% confidence intervals to examine differences in incidence rates. We also quantified changes in incidence rates over time using joinpoint regression. RESULTS: From 2001 to 2019, 72 421 new cases of HPV-associated anal squamous cell carcinoma were diagnosed among women (2.8 per 100 000) and 37 147 among men (1.7 per 100 000). Age-standardized incidence rates were higher in the South compared with other census regions and in counties ranked in the bottom 25% and 25%-75% economically than in the top 25%. The overall incidence rate increased in women but remained stable in men during 2009-2019. Incidence rates increased in adults aged 50 years and older but decreased among those aged 40-44 years from 2001 to 2019 in women and from 2007 to 2019 in men. CONCLUSIONS: There were inequities in HPV-associated anal squamous cell carcinoma incidence by geographic and county-level economic characteristics. Failure to improve vaccine and treatment equity may widen existing disparities.

Prevalence of anal cytology screening among persons with HIV and lack of access to high-resolution anoscopy at HIV care facilities.

BACKGROUND: People with HIV at highest risk of anal cancer include gay, bisexual, and other men who have sex with men and transgender women aged 35 years or older as well as other people with HIV aged 45 years or older. Identifying and treating precancerous lesions can reduce anal cancer incidence in these groups. We assessed the prevalence of anal cytology and access to high-resolution anoscopy among people with HIV overall and in those individuals at highest risk. METHODS: Data were obtained from the Centers for Disease Control and Prevention's Medical Monitoring Project, a population-based survey of people with HIV aged 18 years and older, and a supplemental Medical Monitoring Project facility survey. We report weighted percentages of people with HIV receiving anal cytology during the past 12 months, access to high-resolution anoscopy, and characteristics of HIV care facilities by availability of high-resolution anoscopy. RESULTS: Overall, 4.8% (95% confidence interval [CI] = 3.4% to 6.1%) of people with HIV had undergone anal cytology in the prior 12 months. Only 7.7% (95% CI = 5.1% to 10.6%) of gay, bisexual, and other men who have sex with men as well as transgender women 35 years of age or older and 1.9% (95% CI = 0.9% to 2.9%) of all other people with HIV aged 45 years and older had anal cytology. Prevalence was statistically significantly low among people with HIV with the following characteristics: non-Hispanic or Latino, Black or African American, high school education or less, heterosexual orientation, and living in southern Medical Monitoring Project states. Among people with HIV, 32.8% (95% CI = 28.0% to 37.7%) had no access to high-resolution anoscopy on-site or through referral at their care facility; 22.2% (95% CI = 19.5% to 24.9%) had on-site access; 45.0% (95% CI = 41.5% to 48.5%) had high-resolution anoscopy available through referral. Most facilities that received Ryan White HIV/AIDS Program funding, cared for more than 1000 people with HIV, or provided on-site colposcopy also provided high-resolution anoscopy on-site or through referral. CONCLUSIONS: Rates of anal cytology and access to high-resolution anoscopy were low among people with HIV, including those individuals at highest risk of anal cancer. Our data may inform large-scale implementation of anal cancer prevention efforts.

Rationale and Methodologic Approach for Assessing Ovarian Cancer Treatment and Gynecologic Oncologist Involvement in the Midwest Region of the United States.

Introduction: A study was conducted to examine treatment patterns and outcomes among women with a primary ovarian cancer diagnosis in the Midwest region of the United States, an area that has relatively fewer gynecologic oncologists (GOs) and diverse geography with respect to urban and rural areas. In this paper, we examine the methodology of working with central cancer registries (CCRs) to collect additional data items, including those related to GO involvement and detailed treatment. Methods: Westat recruited 3 state CCRs from the Midwest to participate in the study. Cases were randomly selected from 2010-2012 ovarian, fallopian tube, or primary peritoneal cancer diagnoses in participating registry databases that met the selection criteria. CCRs abstracted additional information for selected cases, including study-specific data items regarding surgery and chemotherapy, GO involvement, and recurrence, where applicable. Results: Abstracts with study-specific data items were collected among a total of 1,003 incidence ovarian cancer cases, with 432 additional abstracts for those cases identified as having recurrence. Variables with the highest frequency of unknowns were mostly for patients who had chemotherapy. While data were available for whether the patient received chemotherapy, the specifics about that chemotherapy were not always available, with dosing and unit being unknown in 27% of cases. There were several challenges with initiating and completing this study associated with recruitment, the data collection timeline, and the collection of study-specific data items. Conclusion: This paper outlines the methodologic approach and experience of collecting additional surgical and chemotherapy treatment variables and data on GO involvement in care from medical records. Experiences from this study provide critical lessons that can be applied to future data collection in this area. Ultimately, the accurate collection of these elements enables researchers to identify groups of women who are not receiving the benefit of optimal surgery or GO care and provides critical data on interventions for improved outcomes and survival in ovarian cancer patients.