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2006 LIVESTRONG Survey for Post-Treatment Cancer Survivors
  
General Information
Dataset Name: 2006 LIVESTRONG Survey for Post-Treatment Cancer Survivors
Data Collection Mode: Self-administered, Web
Population: Adult post-treatment cancer survivors
Collection Period: March 2006   to   February 2007
Number of Observations: 2568
Keywords: cancer, survivorship
Description: Survey Design and Characteristics
The purpose of the 2006 survey was to assess the post-treatment effects of cancer as it related to physical, practical and emotional effects of cancer. The survey instrument was designed through a process that engaged both cancer survivors and experts in the field of survey methodology and oncology through peer review, three focus groups and a pilot test.

The concerns cited in the survey were initially selected and included for the following reasons: 1) they had been used in other surveys; 2) they were concerns that had been identified by the expert advisors as known late effects of cancer; and/or 3) they were areas of concern addressed by LIVESTRONG educational resources. Concerns and related answer choices were only included in the final instrument if they were recognized as effects known or options used by the participants in the focus group and pilot test. This was done intentionally to ensure that the survivor voice was the driving force behind all aspects of this study.

The 2006 survey instrument was divided into three sections: questions related to medical concerns, issues of personal importance and resources and information provided by LIVESTRONG. The majority of the survey questions solicited answers about a few related issues, which will be referred to as a “collection” throughout the rest of this report. For example, one collection addressed four issues related to energy and fatigue; another collection addressed four issues related to sadness and depression. There were a total of 27 collections addressing a broad range of concerns such as heart problems, insurance issues and spirituality.

For each collection, participants were asked to complete the following statement: “Since completing treatment, have any of the following statements been true for you as a result of your experience with cancer?” For almost all collections, the statements that followed included both a low-literacy description of the symptom(s) and a selection related to a doctor having told the survivor that he or she had a particular condition. Participants were then provided with a list of one or more options that were relevant to a particular collection. If individuals did not select “yes” for any concerns within a collection, they were directed to the next collection.

If individuals selected “yes” for any of the concerns within the collection, they were then asked to answer if the concern had occurred before their experience with cancer, since their cancer diagnosis and in the last six months or since their cancer diagnosis but not in the last six months. If respondents had experienced the concern before cancer, they were directed to the next collection. This was done to try to ensure that responses were related to the post-treatment cancer experience. If respondents chose either of the latter answer choices, they were then asked to complete a statement about whether they had received care or help for these concerns. Depending on whether an individual received care, the respondent was sent down one of two paths: care received and care not received.

Methodology
The survey was opened on March 30, 2006, and remained open through February 2007. The survey was available both online and in paper form. The survey was intended for individuals who had been diagnosed with cancer who were currently finished with treatment or managing cancer as a chronic condition—including those still taking medication, such as tamoxifen, to prevent a recurrence as well as those still seeing a doctor to check for new or returning cancers. The study was reviewed by the University of Texas IRB since the first author of this report was both a fellow at LIVESTRONG and a student at the university during the time the study was conducted.

The survey instrument was available on LIVESTRONG.org to anyone who was interested in taking the survey. LIVESTRONG constituents were notified about the survey through the LIVESTRONG Newsletter and emails. Additionally, LIVESTRONG reached out to all of its community and national partner organizations (140 organizations) and all state cancer coalitions to provide information about the survey. These organizations and coalitions were provided with an email and a flyer they could share with their constituents. They also were allowed the opportunity to receive paper copies of the survey with envelopes for free return shipping. Six of these organizations requested a total of 200 paper surveys and 41 surveys were returned to LIVESTRONG. Of note, just less than half (42 percent) of respondents reported having used an educational resource or being engaged with LIVESTRONG’s programmatic work. Respondents were not asked about participating in events, such as the LIVESTRONG Challenge, or purchasing merchandise, such as LIVESTRONG wristbands.

A total of 2,568 individuals accessed the survey. A total of 261 participants were ineligible to continue because they were still on some form of treatment for cancer or were under the age of 18.
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(Last Updated: 5/22/2012 3:55:49 PM by Lance Armstrong Foundation)

     

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