QOL Autoimmune Survey English 62221

AUTOIMMUNE COMMUNITY INSTITUTE
Autoimmune Quality of Life Survey

You are invited to participate in this research project because you are a member of the autoimmune community. Your participation in this research study is voluntary. If you decide not to participate, you may exit your browser at any time. If you decide to participate, you may also withdraw from the study at any time without penalty. You may choose to skip any questions you do not wish to answer.

Participation in the study typically takes approximately 15 minutes and is anonymous. Participants will complete an online survey. When data is reported, responses from individual participants will not be identified. Data will be reported in aggregate with zip code, gender, race, and condition being examples of the most specific level of data provided.

By selecting "ACCEPT" below, you are stating that:

You understand that your participation is voluntary and that you are free to withdraw at any time, without giving any reason, and without any adverse consequences. You understand that research data collected during the study may be looked at by members of the Autoimmune Community Institute (ACI). You give permission for the ACI research team to access your information and research data. You understand how the data will be reported in the final write-up. You understand that the results of this study may be used for health research, communicating autoimmune health needs, publications, or for presentations at conferences. You have read and understand the information above regarding this study. You are voluntarily agreeing to participate in this study and understand that you can opt out at any time without penalty You are at least 18 years of age.

By selecting "DISAGREE", you do not wish to participate in the research study and may exit your browser.

This survey is to determine quality of life in autoimmune patients. More specifically, this survey will be used to determine whether current quality of life research findings meet the needs of the autoimmune community. There is a total of 26 questions, and the survey is expected to take 10-15 minutes. There are 4 sections including the demographic section. You may skip any question you do not wish to answer.
Please select one:

I AGREEI DISAGREE - If selected please discontinue participation.
1. What is the name of your autoimmune condition? If you are undiagnosed please let us know as well.
2. What is your gender?

FemaleMaleNon-binaryNot listedPrefer not to Respond
3. Please specific your race and/or ethnicity
4. What is your age?

18-2930-3940-4950-5960 or above
5. What is your zip code?
6. Do you believe you have a good quality of life?

YesNoNot SureUnable to Answer/Would not like to AnswerOther
Daily Activities

This section will ask questions related to the ability to conduct daily activities. Please answer with how much you agree or disagree with the statement:
7. On most days, I am confident that I can get things done around the house without physical or mental difficulty.

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
8. On most days, I am confident I can maintain my finances (write checks, pay my bills).

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
9. On most days, I am confident I can lift and carry groceries.

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
10. On most days, I am confident that I can do my household activities and run the errands I need to complete

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
11. On most days, I am confident I can keep doing my usual activities at work

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
Social Support

This section will ask questions related to your social groups and social support. Please answer with how much you agree or disagree with each statement.
12. I feel there are people I can talk to if I am upset

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
13. I can get helpful advice from others when dealing with a problem

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
14. I have someone who understands my problems

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
15. I feel close to my friends

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
16. I have people who I can talk to about my health

Strongly AgreeAgreeNeutralDisagreeStrongly Disagree
17. Are there other ways you see your relationships and social support impacting your quality of life either positively or negatively?
Questions about Pain

The last section will ask questions regarding physical pain and its interference in your life. Please think about the last 7 days when you answer these questions.
18. In the last 7 days, how much did pain interfere with your daily activities?

Very muchQuite a bitSomewhatA littleNot at all
19. In the last 7 days, how much did pain interfere with your ability to participate in social activities?

Very muchQuite a bitSomewhatA littleNot at all
20. In the last 7 days, how much did pain interfere with the things you usually do for fun?

Very muchQuite a bitSomewhatA littleNot at all
21. In the last 7 days, how much did pain interfere with your household chores?

Very muchQuite a bitSomewhatA littleNot at all
22. In the last 7 days, how much did pain interfere with your enjoyment of social activities?

Very muchQuite a bitSomewhatA littleNot at all
23. Are there other ways pain impacts your quality of life either positively or negatively?
24. Has the COVID 19 pandemic impacted your quality of life? In what ways?
25. Has the COVID-19 pandemic impacted your medical appointments and access to care? Please describe the care you have not been able to access as a result of the pandemic.
26. Are there any other current events you believe are impacting your quality of life (such as political events, environmental/weather, or other national/international happenings?)
You are finished! Thank you so much for your time and energy completing this survey.

Is there anything you believe impacts your quality of life that we missed? Or is there anything you would like us to know?
Any questions, comments or feedback?
Should be Empty:

Daily Activities

Social Support

Questions about Pain