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Physical Activity and Lymphedema (PAL) Social and Economic Quality of Life (SEQL) Study, Pennsylvania and New Jersey, 2015-2016 (ICPSR 38268)

Released/updated on: 2022-02-01

Geographic coverage: United States, New Jersey, Pennsylvania

Time period: 2000-01-01--2015-02-28

Upper body breast-cancer related lymphedema (BCRL) is a persistent adverse outcome of cancer treatment that affects the physical health and quality of life of up to 1 in 3 of the 2.9 million breast cancer survivors in the US. For those with BCRL, known predictors of progression include BMI, type of surgery and radiation treatment, all of which are associated with social factors. This study was designed to examine the role of finances in long-term BCRL management and progression, and compare the financial experiences of patients managing BCRL to those who do not.

In 2016, the study team conducted 40 interviews with women living in Philadelphia and New Jersey, half of whom had BCRL and half who were breast cancer survivors who had not been diagnosed with BCRL. Participants were sampled from a larger longitudinal study collecting quantitative data on patient's healthcare spending over the course of a year. At the 6-month time point, 40 participants were selected randomly within strata of race, age, and socioeconomic position for 30-minute semi-structured interviews on changes in their economic situation as a result of breast cancer treatment, when applicable, both cancer treatment and ongoing BCRL management. Questions were designed to cover the ways in which costs for treatment affected the patient, their family, and their anticipated future behaviors around health or finance. Themes include interactions with insurance companies, costs of medications, and charitable support services for assisting with breast cancer and BCRL financial costs.

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Expansion Research Capability to Study Comparative Effectiveness in Complex Patients, 2007-2010 [Tampa, St. Petersburg, and Clearwater, Florida] (ICPSR 34544)

Released/updated on: 2013-03-05

Geographic coverage: United States, St. Petersburg, Clearwater, Florida, Tampa

Time period: 2006-01-01--2011-12-31

Overview

The Florida Department of Health and the Florida Cancer Data System (FCDS) collaborated with a hospital network composed of nine clinical facilities, to capture electronic medical records (EMR) data of patients who were diagnosed with or treated for invasive breast cancer from 2007 to 2010. Certain hospital data elements were available throughout 2006. An additional year of 2011 follow-up data was also available for a subset of patients receiving medication treatment. The purpose of the data capture was to advance patient-centered outcomes research to reduce the morbidity and mortality of cancer and other comorbidities.

A breast cancer pilot study was also conducted from a subset of all transmitted EMR records, consisting of admission records with a principal and/or secondary ICD-9-CM diagnosis between 174.0 and 174.9. The subset dataset was then linked to the central cancer registry using patient social security number, first and last name, and date of birth. Using a deterministic matching algorithm a total of 11,506 unique patients were matched to a patient in the FCDS database, resulting in 12,804 primary tumors and 53,940 unique hospital admission records. While the hospital EMR defined the patient dataset, all registry records for that patient were included in the final breast cancer pilot database, regardless of the reporting hospital or the date of diagnosis. This was to ensure capture of the entire diagnostic and treatment profile for each breast cancer patient.

Data Access

These data are not available from ICPSR. The data contain confidential information that can directly identify a patient. There are also reporting facility data. Therefore, to obtain these data, researchers will need to follow the Florida Cancer Data System data-sharing agreement process, as outlined on the FCDS data sharing request.

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Health Information National Trends Survey (HINTS), 2005 (ICPSR 24383)

Released/updated on: 2009-04-13

Geographic coverage: United States

Time period: 2005-01-01--2005-12-31

The Health Information National Trends Survey (HINTS) collects nationally representative data about the American public's access to and use of cancer-related information. The 2005 HINTS survey is the second in an ongoing biannual series and provided information on the changing patterns, needs, and behavior in seeking and supplying cancer information, and explored how cancer risks are perceived. A series of questions addressed colon, lung, cervical, and breast cancer, the Human Papillomavirus (HPV), and respondents' familiarity with cancer screening procedures such as mammogram, colonoscopy, and the PSA test. Specific questions were also posed about the relationship between cancer, diet, and exercise. Information was also gathered on physical and mental health status, participation in community organizations, smoking history, how often respondents ate fruits and vegetables, and whether they had health insurance. Demographic variables include sex, age, race, education level, employment status, marital status, household income, frequency of religious attendance, number of people in the household, ownership of residence, type of residential area (e.g., urban or rural), and whether respondents were born in the United States.

Curated

Health Information National Trends Survey (HINTS), 2003 (ICPSR 24382)

Released/updated on: 2009-03-27

Geographic coverage: United States

Time period: 2003-01-01--2003-12-31

The Health Information National Trends Survey (HINTS) collects nationally representative data about the American public's access to and use of cancer-related information. This data collection consists of the 2003 survey which focused on the changing patterns, needs, and behavior in seeking and supplying cancer information, and explored how cancer risks are perceived. A series of questions specifically addressed colon and breast cancer and respondents' familiarity with cancer screening procedures such as mammogram, colonoscopy, and the PSA test. Information was also gathered on physical and mental health status, smoking history, how often respondents ate fruits and vegetables, and whether they had health insurance. Demographic variables include sex, age, race, education level, employment status, marital status, household income, type of residential area (e.g., urban or rural), and whether respondents had children under the age of 18.

Curated

ABC News Women's Issues Poll, July 1992 (ICPSR 9936)

Released/updated on: 2008-08-25

Geographic coverage: United States

Time period: 1992-06-29--1992-07-06

In this survey, female respondents were asked about issues and problems of particular concern to women. Respondents selected the biggest problems facing women from a list covering the areas of health, children, employment, abortion, crime, and marriage. Comments were solicited on whether this country had made most of the changes needed to give women equal rights with men, and whether respondents had a favorable view of the National Organization for Women (NOW). Respondents were asked to look back on their lives and to indicate whether they wished they had placed more or less emphasis on things such as education, preparation for a career or work outside the home, children, husbands or close romantic relationships, and time for themselves. Those surveyed indicated the extent to which they worried about adequate family medical care, obtaining a legal abortion, sexual harassment, breast cancer, and managing both a job and home life. Additional questions asked if the trend toward both parents working outside the home had a positive or negative effect on families, and if respondents agreed with a series of statements ranging from "Many men today are not as committed to marriage as they used to be," to "I sometimes wish that we could go back to the days when most women didn't work outside the home." Background information on respondents includes political alignment, education, age, marital status, employment status, race, household income, parental status, and employment outside the home.

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CBS News/New York Times Women's Health Poll, May 1997 (ICPSR 4490)

Released/updated on: 2008-05-30

Geographic coverage: United States

Time period: 1997-05-01--1997-05-31

This special topic poll, fielded May 19-22, 1997, is part of a continuing series of monthly surveys that solicit public opinion on the presidency and on a range of other political and social issues. The focus of this data collection was men's and women's health issues. Respondents were asked about health-related topics such as what they thought was the leading cause of death for women, the perceived differences in men's and women's health and their interactions with their doctors, what they thought were the most serious diseases or medical problems facing the country, and whether they thought the federal government spends more money researching health problems as they relate to men or more money researching health problems as they relate to women. Female respondents were polled on whether a doctor had ever discussed mammograms with them, whether they ever had a mammogram, how trustworthy, safe, and painful mammograms were, at which age women should begin getting mammograms, and how often they conducted breast self-examinations. All respondents were asked whether they tried alternative medicine, whether they had considered trying alternative medicine, and whether they would choose alternative medicine instead of traditional medicine. A series of questions were asked about the type of interactions respondents had with their doctors such as whether respondents felt intimidated by their doctors, how comfortable respondents felt asking their doctors a lot of questions, whether respondents thought their doctors spoke down to them, and whether respondents usually call their doctors by their first name. Respondent's views were also sought on other topics such as the respondent's state of health, menopause, and hormone replacement therapy. Demographic variables included sex, age, race, education level, employment status, presence of children and teenagers in the household, household income, marital status, political party affiliation, political philosophy, type of residential area (e.g., urban or rural), and religious preference.

Curated

CBS News/New York Times Women's Health Poll, February 1997 (ICPSR 4487)

Released/updated on: 2007-01-31

Geographic coverage: United States

Time period: 1997-02-01--1997-02-28

This special topic poll, fielded February 18-19, 1997, is part of a continuing series of monthly surveys that solicit public opinion on the presidency and on a range of other political and social issues. The focus of this data collection was on women's health issues. Views were sought on whether government health agencies paid enough attention to women's health issues, and how well the federal government regulated the environmental practices of businesses and the safety of medical equipment and procedures. Respondents were asked to name the leading cause of death for women and whether they had ever heard of mammograms. Female respondents were polled on whether a doctor had ever discussed mammograms with them, whether they had ever had one, how accurate, safe, and painful they were, at which age women should begin getting mammograms, and whether the federal government should set guidelines for mammograms. Female respondents were also polled on the benefits of early detection of breast cancer and how often they conducted breast self-examinations. All respondents were polled on whether they had noticed the new television program ratings system, whether they had used the ratings to prohibit their children from watching certain television programs, and how many hours per day their children watched television. Additional topics addressed health insurance coverage, whether the respondent or a female relative was ever diagnosed with breast cancer, and whether respondents would like to take an "adventure" vacation. Demographic variables included sex, age, race, education level, household income, political party affiliation, political philosophy, type of residential area (e.g., urban or rural), and religious preference.