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.

Diving deeper into distress screening implementation in oncology care.

BACKGROUND: Responding to calls for additional research that identifies effective distress screening (DS) processes, including referral practices subsequent to screening and receipt of recommended care, we engaged in qualitative research as part of a larger (mixed methods) study of distress screening. This qualitative inquiry of oncology professionals across different facilities in the United States examined routine DS implementation, facilitators and challenges staff encounter with DS processes, and staff members' perceived value of DS. PARTICIPANTS AND METHODS: We conducted key informant interviews and focus groups with staff in 4 Commission on Cancer (CoC)-accredited oncology facilities (a total of 18 participants) to understand implementation of routine DS within oncology care. We used a rigorous data analysis design, including inductive and deductive approaches. RESULTS: Respondents believe DS enhances patient care and described ways to improve DS processes, including administering DS at multiple points throughout oncology care, using patient-administrated DS methods, and enhancing electronic health records infrastructure to better collect, record, and retrieve DS data. Respondents also identified the need for additional psychosocial staff at their facilities to provide timely psychosocial care. CONCLUSIONS: Results reinforce the value of DS in cancer care, including the importance of follow-up to screening with psychosocial oncology providers. Understanding and resolving the barriers and facilitators to implementing DS are important to ensure appropriate psychosocial care for people with cancer. Insights from oncology staff may be used to enhance the quality of DS and subsequent psychosocial care, which is an essential component of oncology care.

Cultural adaptation of the Italian version of the Patient-Reported Outcomes Common Terminology Criteria for Adverse Event (PRO-CTCAE®).

INTRODUCTION: US National Cancer Institute's (NCI) Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE®) is a library of 78 symptom terms and 124 items enabling patient reporting of symptomatic adverse events in cancer trials. This multicenter study used mixed methods to develop an Italian language version of this widely accepted measure, and describe the content validity and reliability in a diverse sample of Italian-speaking patients. METHODS: All PRO-CTCAE items were translated in accordance with international guidelines. Subsequently, the content validity of the PRO-CTCAE-Italian was explored and iteratively refined through cognitive debriefing interviews. Participants (n=96; 52% male; median age 64 years; 26% older adults; 18% lower educational attainment) completed a PRO-CTCAE survey and participated in a semi-structured interview to determine if the translation captured the concepts of the original English language PRO-CTCAE, and to evaluate comprehension, clarity and ease of judgement. Test-retest reliability of the finalized measure was explored in a second sample (n=135). RESULTS: Four rounds of cognitive debriefing interviews were conducted. The majority of PRO-CTCAE symptom terms, attributes and associated response choices were well-understood, and respondents found the items easy to judge. To improve comprehension and clarity, the symptom terms for nausea and pain were rephrased and retested in subsequent interview rounds. Test-retest reliability was excellent for 41/49 items (84%); the median intraclass correlation coefficient was 0.83 (range 0.64-0.94). DISCUSSION: Results support the semantic, conceptual and pragmatic equivalence of PRO-CTCAE-Italian to the original English version, and provide preliminary descriptive evidence of content validity and reliability.

Disparities in Psychosocial Distress Screening and Management of Lung and Ovarian Cancer Survivors.

PURPOSE: Since 2016, the American College of Surgeons' Commission on Cancer (CoC) has required routine distress screening (DS) of cancer survivors treated in their accredited facilities to facilitate early identification of survivors with psychosocial concerns. Lung and ovarian cancer survivors have relatively low 5-year survival rates and may experience high levels of distress. We examined the extent to which ovarian and lung cancer survivors received CoC-mandated DS and whether DS disparities exist on the basis of diagnosis, sociodemographic factors, or facility geography (urban/rural). METHODS: This study included a quantitative review of DS documentation and follow-up services provided using existing electronic health records (EHRs). We worked with 21 CoC-accredited facilities across the United States and examined EHRs of 2,258 survivors from these facilities (1,618 lung cancer survivors and 640 ovarian cancer survivors) diagnosed in 2016 or 2017. RESULTS: Documentation of DS was found in half (54.8%) of the EHRs reviewed. Disparities existed across race/ethnicity, cancer type and stage, and facility characteristics. Hispanic/Latino and Asian/Pacific Islander survivors were screened at lower percentages than other survivors. Patients with ovarian cancer, those diagnosed at earlier stages, and survivors in urban facilities had relatively low percentages of DS. Non-Hispanic Black survivors were more likely than non-Hispanic White survivors to decline further psychosocial services. CONCLUSION: Despite the mandate for routine DS in CoC-accredited oncology programs, gaps remain in how many and which survivors are screened for distress. Improvements in DS processes to enhance access to DS and appropriate psychosocial care could benefit cancer survivors. Collaboration with CoC during this study led to improvement of their processes for collecting DS data for measuring standard adherence.

Developing Geographic Areas for Cancer Reporting Using Automated Zone Design.

The reporting and analysis of population-based cancer statistics in the United States has traditionally been done for counties. However, counties are not ideal for analysis of cancer rates, due to wide variation in population size, with larger counties having considerable sociodemographic variation within their borders and sparsely populated counties having less reliable estimates of cancer rates that are often suppressed due to confidentiality concerns. There is a need and an opportunity to utilize zone design procedures in the context of cancer surveillance to generate coherent, statistically stable geographic units that are more optimal for cancer reporting and analysis than counties. To achieve this goal, we sought to create areas within each US state that are: 1) similar in population size and large enough to minimize rate suppression; 2) sociodemographically homogeneous; 3) compact; and 4) custom crafted to represent areas that are meaningful to cancer registries and stakeholders. The resulting geographic units reveal the heterogeneity of rates that are hidden when reported at the county-level while substantially reducing the need to suppress data. We believe this effort will facilitate more meaningful comparative analysis of cancer rates for small geographic areas and will advance the understanding of cancer burden in the United States.

Assessment of Interstate Residential Mobility of SEER Patients: SEER and LexisNexis Residential Address Linkage.

The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) program is continuously exploring opportunities to augment its already extensive collection of data, enhance the quality of reported cancer information, and contribute to more comprehensive analyses of cancer burden. This manuscript describes a recent linkage of the LexisNexis longitudinal residential history data with 11 SEER registries and provides estimates of the inter-state mobility of SEER cancer patients. To identify mobility from one state to another, we used state postal abbreviations to generate state-level residential histories. From this, we determined how often cancer patients moved from state-to-state. The results in this paper provide information on the linkage with LexisNexis data and useful information on state-to-state residential mobility patterns of a large portion of US cancer patients for the most recent 1-, 2-, 3-, 4-, and 5-year periods. We show that mobility patterns vary by geographic area, race/ethnicity and age, and cancer patients tend to move less than the general population.

Partnering with healthcare facilities to understand psychosocial distress screening practices among cancer survivors: pilot study implications for study design, recruitment, and data collection.

BACKGROUND: We sought to understand barriers and facilitators to implementing distress screening (DS) of cancer patients to inform and promote uptake in cancer treatment facilities. We describe the recruitment and data collection challenges and recommendations for assessing DS in oncology treatment facilities. METHODS: We recruited CoC-accredited facilities and collected data from each facility's electronic health record (EHR). Collected data included cancer diagnosis and demographics, details on DS, and other relevant patient health data. Data were collected by external study staff who were given access to the facility's EHR system, or by facility staff working locally within their own EHR system. Analyses are based on a pilot study of 9 facilities. RESULTS: Challenges stemmed from being a multi-facility-based study and local institutional review board (IRB) approval, facility review and approval processes, and issues associated with EHR systems and the lack of DS data standards. Facilities that provided study staff remote-access took longer for recruitment; facilities that performed their own extraction/abstraction took longer to complete data collection. CONCLUSION: Examining DS practices and follow-up among cancer survivors necessitated recruiting and working directly with multiple healthcare systems and facilities. There were a number of lessons learned related to recruitment, enrollment, and data collection. Using the facilitators described in this manuscript offers increased potential for working successfully with various cancer centers and insight into partnering with facilities collecting non-standardized DS clinical data.

The Chinese and Korean American immigrant experience: a mixed-methods examination of facilitators and barriers of colorectal cancer screening.

OBJECTIVE: Among Asian Americans, colorectal cancer (CRC) is the second leading cause of cancer deaths. Despite strong evidence that screening can reduce CRC-related mortality, fewer Chinese and Koreans receive screening as compared to non-Hispanic whites and blacks. The objective of this study was to examine facilitators and barriers as well as strategies to promote CRC screening in this population. DESIGN: This study employed a mixed-methods design. We conducted 17 key informant interviews and 12 focus groups in the Washington, D.C. metropolitan area. 120 Chinese and Korean focus group participants, aged 50 to 85, also provided quantitative data through self-administered surveys. All participants were asked to discuss facilitators and barriers of CRC screening, including in relation to culture. RESULTS: Participants who had a regular physician and doctor's recommendation for CRC screening were more likely to ever receive a colonoscopy (adjusted odds ratio (aOR) = 3.51; 95% confidence interval (CI): 1.26, 9.79 and aOR = 6.61; 95% CI: 2.63, 16.65, respectively). A doctor's recommendation was also significantly associated with receipt of a fecal occult blood test (FOBT) (aOR = 4.00; 95% CI: 1.43, 11.15). In terms of barriers, those who reported having no time and not having symptoms were less likely to have a colonoscopy (aOR = 0.15; 95% CI: 0.03, 0.82 and aOR = 0.02; 95% CI: 0.002, 0.23, respectively) than those who had time and symptoms. Preventive healthcare was often not viewed as a priority, particularly for those living the'immigrant life,' who gave precedence to work. Cultural barriers to CRC screening included language (e.g. limited English proficiency and low health literacy); fear of finding CRC and burdening the family especially children; fatalism; and stigma towards cancer. CONCLUSIONS: Future interventions and programs aiming to increase CRC screening among Chinese and Korean Americans should address both cultural and non-cultural factors that influence CRC screening uptake.

Responses to threat of influenza A(H7N9) and support for live poultry markets, Hong Kong, 2013.

We conducted a population survey in Hong Kong to gauge psychological and behavioral responses to the threat of influenza A(H7N9) and support for closure of live poultry markets. We found low anxiety and low levels of exposure to live poultry but mixed support for permanent closure of the markets.

Anxiety, worry and cognitive risk estimate in relation to protective behaviors during the 2009 influenza A/H1N1 pandemic in Hong Kong: ten cross-sectional surveys.

BACKGROUND: Few studies have investigated associations between psychological and behavioral indices throughout a major epidemic. This study was aimed to compare the strength of associations between different cognitive and affective measures of risk and self-reported protective behaviors in a series of ten cross-sectional surveys conducted throughout the first wave of influenza A/H1N1 pandemic. METHODS: All surveys were conducted using questionnaire-based telephone interviews, with random digit dialing to recruit adults from the general population. Measures of anxiety and worry (affective) and perceived risk (cognitive) regarding A/H1N1 were made in 10 serial surveys. Multivariate logistic regression models were used to estimate the cognitive/affective-behavioral associations in each survey while multilevel logistic models were conducted to estimate the average effects of each cognitive/affective measure on adoption of protective behaviors throughout the ten surveys. RESULTS: Excepting state anxiety, other affective measures including "anticipated worry", "experienced worry" and "current worry" specific to A/H1N1 risk were consistently and strongly associated with adoption of protective behaviors across different survey periods. However, the cognitive-behavioral associations were weaker and inconsistent across the ten surveys. Perceived A/H1N1 severity relative to SARS had stronger associations with adoption of protective behaviors in the late epidemic periods than in the early epidemic periods. CONCLUSION: Risk-specific worries appear to be significantly associated with the adoption of protective behaviors at different epidemic stages, whereas cognitive measures may become more important in understanding people's behavioral responses later in epidemics. Future epidemic-related psycho-behavioral research should include more affective-loaded measures of risk.

Seroprevalence of pandemic H1N1 antibody among health care workers in Hong Kong following receipt of monovalent 2009 H1N1 influenza vaccine.

BACKGROUND: Healthcare workers in many countries are recommended to receive influenza vaccine to protect themselves as well as patients. A monovalent H1N1 vaccine became available in Hong Kong in December 2009 and around 10% of local healthcare workers had received the vaccine by February 2010. METHODS: We conducted a cross-sectional study of the prevalence of antibody to pandemic (H1N1) 2009 among HCWs in Hong Kong in February-March 2010 following the first pandemic wave and the pH1N1 vaccination campaign. In this study we focus on the subset of healthcare workers who reported receipt of non-adjuvanted monovalent 2009 H1N1 vaccine (Panenza, Sanofi Pasteur). Sera collected from HCWs were tested for antibody against the pH1N1 virus by hemagglutination inhibition (HI) and viral neutralization (VN) assays. RESULTS: We enrolled 703 HCWs. Among 104 HCWs who reported receipt of pH1N1 vaccine, 54% (95% confidence interval (CI): 44%-63%) had antibody titer ≥1∶40 by HI and 42% (95% CI: 33%-52%) had antibody titer ≥1∶40 by VN. The proportion of HCWs with antibody titer ≥1∶40 by HI and VN significantly decreased with age, and the proportion with antibody titer ≥1∶40 by VN was marginally significantly lower among HCWs who reported prior receipt of 2007-08 seasonal influenza vaccine (odds ratio: 0.43; 95% CI: 0.19-1.00). After adjustment for age, the effect of prior seasonal vaccine receipt was not statistically significant. CONCLUSIONS: Our findings suggest that monovalent H1N1 vaccine may have had suboptimal immunogenicity in HCWs in Hong Kong. Larger studies are required to confirm whether influenza vaccine maintains high efficacy and effectiveness in HCWs.

Community psychological and behavioral responses through the first wave of the 2009 influenza A(H1N1) pandemic in Hong Kong.

BACKGROUND: Little is known about the community psychological and behavioral responses to influenza pandemics. METHODS: Using random digit dialing, we sampled 12,965 Hong Kong residents in 13 cross-sectional telephone surveys between April and November 2009, covering the entire first wave of the 2009 influenza A(H1N1) pandemic. We examined trends in anxiety, risk perception, knowledge on modes of transmission, and preventive behaviors. RESULTS: Respondents reported low anxiety levels throughout the epidemic. Perceived susceptibility to infection and perceived severity of H1N1 were initially high but declined early in the epidemic and remained stable thereafter. As the epidemic grew, knowledge on modes of transmission did not improve, the adoption of hygiene measures and use of face masks did not change, and social distancing declined. Greater anxiety was associated with lower reported use of hygiene measures but greater social distancing. Knowledge that H1N1 could be spread by indirect contact was associated with greater use of hygiene measures and social distancing. CONCLUSIONS: The lack of substantial change in preventive measures or knowledge about the modes of H1N1 transmission in the general population suggests that community mitigation measures played little role in mitigating the impact of the first wave of 2009 influenza A(H1N1) pandemic in Hong Kong.