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

Version Date: Feb 1, 2022

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Principal Investigator(s):
Lorraine T. Dean, Johns Hopkins Bloomberg School of Public Health

Series:

https://doi.org/10.3886/ICPSR38268.v1

Version V1

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Summary

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.

Citation

Dean, Lorraine T. Physical Activity and Lymphedema (PAL) Social and Economic Quality of Life (SEQL) Study, Pennsylvania and New Jersey, 2015-2016. Inter-university Consortium for Political and Social Research [distributor], 2022-02-01. https://doi.org/10.3886/ICPSR38268.v1

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Funding

United States Department of Health and Human Services. National Institutes of Health. National Cancer Institute (K01CA184288)

Subject Terms

Geographic Coverage

Restrictions

This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2000-01-01 -- 2015-02-28

Date of Collection

2015-11-01 -- 2016-02-28
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Study Purpose

The purpose of this study is to examine the role of finances in long-term body breast-cancer related lymphedema (BCRL) management and progression, and compare the financial experiences of patients managing BCRL to those who do not.

Study Design

This study uses a cross-sectional approach using individual, face to face interviews. The respondents were selected from a previously completed observational study.

Sample

40 interviewees were randomly selected within strata to ensure equal representation by race (mostly Black and White), age, and socioeconomic position.

Interviewees were selected from 129 participants in an observational study. Participants for the parent study were recruited from the PAL study (previous study of breast cancer survivors involved in an exercise and weight loss trial), and from community-based recruitment techniques.

Time Method

Cross-sectional

Universe

Breast cancer survivors ages 44-88

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

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Original Release Date

2022-02-01

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Notes

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  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.