Thank you to everyone who promoted and completed the 2018 CF Health Insurance Survey. The survey is now closed.
The 2018 CF Health Insurance Survey is part of a pivotal study to better understand how people with cystic fibrosis experience health insurance, access to care, and cost. The 15-minute survey is available to patients and families at cff.org/survey.
As the health care system changes, gathering information around how people with CF navigate insurance challenges, what challenges they face, and how coverage impacts access to care is pressing. This study includes an online survey for people with CF and caregivers as well as in-depth interviews. Results will be used to advocate for the needs of people with CF and help shape Compass programming to address widespread challenges.
Care center teams are critical partners to help promote the survey to patients and families, as our goal is to reach 2,500 responses. To achieve a realistic cross-section of the CF community, we aim to hear from individuals from diverse socioeconomic, geographic, and racial/ethnic backgrounds.
To facilitate study promotion, the Foundation is providing laminated flyers and postcards for interested participants. These shareable materials can be downloaded via the downloads box on the right side of this page. Flyers and postcards are being mailed to centers. To request additional flyers, postcards, or paper copies of the survey, please visit the 2018 CF Health Insurance Survey Materials Request Form.
The 15-minute survey is available to patients and families at cff.org/survey. To educate patients and families, we encourage you to use the postcards and flyers.
Informational Webinar
Recording
The Foundation hosted a series of webinars to review the survey objectives, share ways to promote the survey, and answer questions. A recording of the webinar is available here.
Topics
- Study purpose
- How care centers can help promote the survey to patients and caregivers
- Materials to facilitate study promotion
Presenters
- Lisa Feng, senior director for policy and advocacy at the Cystic Fibrosis Foundation
- Marsha Regenstein, professor of health policy at the George Washington University
Frequently Asked Questions
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How long is the survey? How many questions and how long will it take to complete?
- The survey contains approximately 48 questions and should take about 15 minutes to complete.
- The survey includes several questions about health insurance coverage and costs. Some of this information can be found on an Explanation of Benefits form (for information on deductibles) and on paystubs (for information on premium costs).
- A sample survey is available to view the questions. Please do not print and distribute to your patients, as they will be unable to submit it as a completed survey.
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Who should take the survey?
- The survey has been developed for:
- People with CF
- Parents of children with CF
- Spouses/partners of people with CF
- Caregivers of people with CF who are not the parent or spouse/partner
- If the respondent does not have CF, he/she should be familiar with details related to the health insurance plan that covers the person with CF. The first few questions of the survey will determine which version of the survey should be used and will automatically take the respondent to that version.
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Will participants be offered an incentive, like a gift card?
- Gift cards are no longer being offered. The survey is still open, and we encourage people with CF and their caregivers to participate.
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If a person with CF takes the survey, should the parent of that person also take the survey?
- If a person with CF completes the survey, the parent of that person should not complete the survey, unless it is for a different child with CF.
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Can a participant save the survey and come back to it later?
- Yes, but it is preferable to complete the survey in one sitting.
- If the respondent must exit the survey before it is completed, the respondent should:
- Click the prompt that says “Save and Return Later” at the bottom of the screen.
- The respondent will receive a message with a code that must be written down to return to the saved survey. It is important to WRITE DOWN THE CODE to have handy when the participant is ready to go back to the survey.
- The survey can be saved and revisited as often as needed but a new code will be generated each time. Without the return code, the participant will have to start the survey over again.
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Can participants take the survey on a mobile device?
- Yes, although some people may prefer a larger screen to see the questions.
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Center staff often help patients and families navigate insurance issues -- can they work with patients to help answer survey questions?
- The survey is designed for people with CF, family members, or caregivers to take without the assistance of the CF care center.
- If someone is taking this survey during their care center visit and has a quick question about the survey, please feel free to offer some help. If someone has a more substantive question or is taking the survey from home and needs assistance, please encourage them to call 202-994-7368 or email cffcoverage@gwu.edu.
- Additionally, if anyone has questions about the purpose of the study or methodology, please encourage them to call 202-994-7368 or email cffcoverage@gwu.edu.
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Will the survey be available in Spanish?
- No, the survey is only available in English.
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Will paper surveys be available?
- Survey respondents are encouraged to complete this survey online. However, paper surveys are available upon request if your patients would prefer to complete a paper survey. CF care centers may request stamped, pre-addressed envelopes for completed surveys to be returned to the research team at George Washington University Milken School of Public Health.
- To request paper copies of the survey, additional flyers, or postcards, please visit the 2018 CF Health Insurance Survey Materials Request Form.
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Will patients need insurance cards or other information to fill out the survey?
- The survey includes several questions about health insurance coverage and costs. Some of this information can be found on an Explanation of Benefits form (for information on deductibles) and on paystubs (for information on premium costs).
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Will there be identifiable information collected? Will centers have to go through an IRB?
- This study should be IRB exempt. Care centers are not recruiting patients for the survey and will not collect identifiable information about respondents. We are asking care centers to display flyers and postcards to increase awareness about the survey.
- Respondents will not be asked for identifying information to complete the survey. If they choose to receive a $10 electronic gift card for completing the survey, they will provide email addresses to the research team at George Washington University Milken School of Public Health.
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Can center staff see the survey questions?
- A sample survey is available to view the questions. Please do not print and distribute to your patients, as they will be unable to submit it as a completed survey.
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Will centers be able to see the results?
- Once the study is complete, the findings will be shared with CF clinicians and used to inform our discussions with policymakers and legislators.
- The survey findings will deepen the Foundation's understanding of the extent to which health insurance coverage supports and meets the needs of routine and specialized services for people with CF. The results will help guide the CF Foundation's policy work and Compass programming.
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Who should patients contact if they have questions?
- For questions or comments, survey respondents should contact the research team at George Washington University Milken School of Public Health at cffcoverage@gwu.edu.
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Who should centers contact if they have questions?
- For questions or comments, CF care centers should contact the research team at George Washington University Milken School of Public Health at cffcoverage@gwu.edu.
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How can patients access the survey?
- Patients can use the following link to access the survey: cff.org/survey.
- For questions or comments, survey respondents should contact the research team at George Washington University Milken School of Public Health at cffcoverage@gwu.edu.