An online survey of adults with cystic fibrosis: accessing and using life expectancy information - Dataset codebook

Permanent Identifier:

https://doi.org/10.17037/DATA.00001077

Data Description

A spreadsheet containing a subset of the original data from all respondents (n=85) from an online questionnaire entitled "Online survey to gain understanding of what people with cystic fibrosis aged 16+ would like to learn about their life expectancy and other outcomes". The survey was conducted in July 2016. Responses to all multiple choice questions are included. Free text responses have been removed in accordance with information provided to the respondents. Ages have been categorised. The data do not contain any identifying information.

Access to this dataset is restricted to protect study participants. Researchers wishing to obtain the dataset should submit an access request (via the web form) that describes the research purpose for which it will be used, ethics approvals obtained, and list the specific variables requested. The request will be evaluated by a study committee and, if approved, a data transfer agreement for signing prior to being provided with the dataset. Any participant-identifiable information contained within the dataset will be removed or disguised prior to being provided.

Dataset fields

Multiple responses are separated by a comma.

Variable name/question	Information and multiple choice responses
Anonymous ID	Anonymous identification number: 1 to 85
1. Are you a person with CF who is also aged 16 or older?	This is “Yes” for all 85 respondents. Individuals who responded “No” did not proceed with subsequent questions.
2. What is your sex?	Male Female
3. How old are you? [This has been categorised]	Age was recorded in years. This has been categorised for this data set for reasons of anonymity.
4. What of the following best describes your current employment status?	Full-time employment Part-time employment Self-employed Student Homemaker Disabled Unemployed Retired Other
5. Do you live in the UK?	Yes No
6. Which of the following best describes your living arrangements?	Living at home with parents or other close family relatives or guardians Living with a spouse or partner Living with friends or siblings Living alone Other
7. Do you have, or have you ever had, any siblings?	Yes No
7.a. Which of the following describes your siblings? You can select more than one answer here.	I have one or more siblings who are living and who have CF I have one or more siblings who are living and who do NOT have CF I have one or more siblings who have died and who had CF I have one or more siblings who have died and who did NOT have CF Other
8. Has your doctor/CF team ever provided you with information about your life expectancy as part of your routine care?	Yes No Not sure
8.a. Regarding your answer "Yes", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
9. Have you ever actively sought information about your life expectancy from your doctor/CF team?	Yes, and I received some information from them Yes, but I did not receive any information from them No Not sure
9.a. Regarding your answer "Yes, and I received some information from them", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
9.b. Regarding your answer "No", do you think there will be a time when you will want more information about your life expectancy and, if so, for what purposes? You can select more than one answer here.	No Perhaps: just for general information Perhaps: in planning your education Perhaps: in planning your career path Perhaps: in planning meeting a partner Perhaps: in planning your family Perhaps: in choosing how you spend your leisure time Perhaps: to help make decisions or have discussions jointly with your CF specialist team on future treatments Perhaps: to help plan strategies for maintaining as best health as possible (e.g. your exercise programme, physical activity schedules) Perhaps: to help manage mentally/psychologically your current health status Perhaps: in making other life plans Multiple responses are separated by a comma.
9.c. Regarding your answer "Not sure", do you think there will be a time when you will want more information about your life expectancy and, if so, for what purposes? You can select more than one answer here.	No Perhaps: just for general information Perhaps: in planning your education Perhaps: in planning your career path Perhaps: in planning meeting a partner Perhaps: in planning your family Perhaps: in choosing how you spend your leisure time Perhaps: to help make decisions or have discussions jointly with your CF specialist team on future treatments Perhaps: to help plan strategies for maintaining as best health as possible (e.g. your exercise programme, physical activity schedules) Perhaps: to help manage mentally/psychologically your current health Perhaps: in making other life plans Multiple responses are separated by a comma.
10. Have you ever actively sought information about your life expectancy from any of the following other sources? You can select more than one answer here.	Reports from the Cystic Fibrosis Trust/the Cystic Fibrosis Trust website Research literature Patient websites/forums Other internet sites Other people Other sources None of these Multiple responses are separated by a comma.
10.a. Regarding your answer "Reports from the Cystic Fibrosis Trust/the Cystic Fibrosis Trust website", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.b. Regarding your answer "Research literature", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.c. Regarding your answer "Patient websites/forums", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.d. Regarding your answer "Other internet sites", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.e. Regarding your answer "Other people", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.f. Regarding your answer "Other sources", how beneficial did you find this information, in terms of whether you found the information interesting or useful to know?	Not at all beneficial Somewhat beneficial Very beneficial
10.h. Regarding your answer "None of these", why have you not sought information about your life expectancy? You can select more than one answer here.	Because you feel you have received most or all of the information you would like from your doctor/CF team Because you don’t want to know Because you feel the information available will not be relevant and/or useful to you Other Multiple responses are separated by a comma.
11. How do you use, or how have you used in the past, any information which you have learned about your life expectancy, either from your doctor/CF care team or from other sources? You can select more than one answer here.	Not much Just for general information In planning your education In planning your career path In planning meeting a partner In planning your family In choosing how you spend your leisure time To help make decisions or have discussions jointly with your CF specialist team on future treatments To help plan strategies for maintaining as best health as possible (eg. your exercise programme, physical activity schedules) To help manage mentally/psychologically your current health status In making other life plans I have never received any information about my life expectancy Multiple responses are separated by a comma.
12. Would you like to be able to access more personalised information about your life expectancy? The personalised information on which this is based could include, for example, your FEV1% predicted and how this is changing as you get older, your weight, the treatments you are using, whether you have received an organ transplant, as well as more intrinsic features such as your gender and your genetics.	Yes No Not sure
12.a. Regarding your answer "Yes", how do you think you would prefer to receive this information? You can select more than one answer here.	At the clinic from my doctor/CF care team By myself, for example via an online tool Other Multiple responses are separated by a comma.
13. One of the aims of my research is to provide more personalised information on your life expectancy which can be updated as you get older to take into account up-to-date information about your health status. Would you find such information useful as an indicator of how you are doing, including how you are doing relative to other people the same age as you (even if you are not specifically interested in your life expectancy)?	Yes No Not sure
13.a. Regarding you answer "Yes", how do you think you would prefer to receive this information? You can select more than one answer here.	At the clinic from my doctor/CF care team By myself, for example via an online tool Other Multiple responses are separated by a comma.
14. Would you be interested in how long it might be until you reach other milestones, in addition to or instead of your overall life expectancy? For example reaching a level of FEV1% predicted, having a transplant, or acquiring chronic pseudomonas.	Yes No Not sure