Autoimmune Care Experience Survey

Living with or seeking answers for autoimmune-related symptoms can involve multiple providers, tests, treatments, and a lot of information to manage.

This survey is designed to better understand the experiences of people navigating autoimmune healthcare, including the diagnostic process, communication between providers, symptom and flare tracking, lab results, treatment management, and the challenges that can come with coordinating care.

Whether you have a confirmed autoimmune diagnosis, are currently being evaluated, or are still searching for answers, your experience is valuable.

Your responses will help identify gaps in autoimmune care and areas where the healthcare experience could be improved. All anonymous.

Thank you for participating in our survey. Your feedback is important.

Question Title

1. Health Survey Disclaimer

This survey is intended for research and information-gathering purposes only. It is not intended to provide medical advice, diagnosis, treatment, or recommendations regarding autoimmune diseases or other health conditions.

Participation is voluntary. You may choose not to answer any question or may stop participating at any time. Please do not provide your name, medical record number, or other directly identifying information unless the survey specifically asks for it.

The information you provide will be used only for the purposes described in this survey. If you have questions or concerns about your health, symptoms, medications, or treatment, please consult a qualified healthcare professional. If you are experiencing a medical emergency, contact emergency services or seek immediate medical attention.

By continuing with this survey, you acknowledge that you understand its purpose and that your participation is voluntary.

I accept the terms and agree to participate.

I do not accept the terms and do not wish to participate.

Question Title

2. Where are you currently in your autoimmune health journey?

Diagnosed with an autoimmune condition

Currently being evaluated for one

Suspect I may have one but haven't begun formal evaluation

Previously evaluated but did not receive a diagnosis

Prefer not to say

Question Title

3. How long did it take from when you first began experiencing symptoms to receiving an autoimmune diagnosis or a clear explanation for your symptoms?

Less than 3 months

3-6 months

6-12 months

1-2 years

2-5 years

More than 5 years

I'm still seeking answers

Prefer not to say

Question Title

4. How many different healthcare professionals did you see during the diagnosis/evaluation process?

2-3

4-5

6-10

More than 10

Prefer not to say

Question Title

5. How well do you feel your healthcare providers communicate and coordinate with one another?

Very well

Somewhat well

Neither well nor poorly

Somewhat poorly

Very poorly

Not applicable - I only see one provider

Prefer not to say

Question Title

6. Have you ever felt responsible for acting as the “messenger” between different doctors or specialists?

Never

Rarely

Sometimes

Often

Almost Always

Not applicable

Prefer not to say

Question Title

7. Which parts of managing your autoimmune care have been most difficult? (Being heard, finding specialists, getting a diagnosis, managing records, labs/results, tracking symptoms or flare triggers, medications, insurance, treatment plans, knowing who to contact, etc.)

Getting providers to take my symptoms seriously

Getting a diagnosis or explanation

Finding the right specialists

Coordinating between providers

Keeping track of medical records

Keeping track of labs/results

Tracking symptoms or flare triggers

Managing medications

Understanding my treatment plan

Insurance or prior authorization issues

Knowing which provider to contact

Scheduling appointments

Other

Nothing applicable

Prefer not to say

Question Title

8. How do you currently keep track of your symptoms and flares? Select all that apply.

Notes app

Journal or paper

Spreadsheet

Health-tracking app

Photos

Calendar

Patient portal

I rely mostly on memory

I don't track them

Other

Prefer not to say

Question Title

9. How easy or difficult is it to recognize patterns or triggers associated with your flares?

Very easy

Easy

Somewhat easy

Neither easy nor difficult

Somewhat difficult

Difficult

Very difficult

I'm not sure what triggers my flares

Not applicable

Question Title

10. Have you ever experienced significant symptoms even when your lab results were normal or inconclusive?

Yes, frequently

Yes, occasionally

Not sure

I haven't had relevant lab testing

Prefer not to say

Question Title

11. How easy is it for you to access and understand your lab results?

Very easy

Easy

Somewhat easy

Neither easy nor difficult

Somewhat difficult

Difficult

Very difficult

I can access them, but I don’t understand what they mean

Prefer not to say

Question Title

12. How helpful would it be to see your symptoms, medications, lab results, and provider recommendations together in one place?

Extremely helpful

Very helpful

Somewhat helpful

Not so helpful

Not at all helpful

Question Title

13. How easy or difficult is it to keep track of your medications and changes to your treatment plan?

Very easy

Somewhat easy

Neither easy nor difficult

Somewhat difficult

Very difficult

Not applicable — I don’t currently take medication for my condition

Prefer not to say

Question Title

14. When you experience a flare or new symptom, do you know which healthcare provider you should contact?

Always

Most of the time

Sometimes

Rarely

Never

I don’t currently have a provider I can contact

Prefer not to say

Question Title

15. Have you ever delayed contacting a healthcare provider because you weren’t sure who to contact, whether the symptom was important enough, or what to do next?

Very often

Often

Sometimes

Rarely

Never

Prefer not to say

Question Title

16. How well do you feel your healthcare providers understand the complete picture of your health rather than focusing only on their individual specialty?

Extremely well

Very well

Moderately well

Slightly well

Not at all

Not sure

Prefer not to say

Question Title

17. What do you wish your healthcare providers better understood about living with an autoimmune condition? (Skip if you prefer not to say)

Question Title

18. What part of managing your autoimmune condition currently takes the most time or energy from you? (Skip if you prefer not to say)

Question Title

19. If you could change one thing about the healthcare experience for people with autoimmune conditions, what would it be? (Skip if you prefer not to say)

Question Title

20. If you'd like to specify, please list which autoimmune disorder(s) you have. Completely optional, so skip the question if you'd like. No pressure. Once again, all answers are anonymous. Thanks!

Autoimmune Care Experience Survey

Question Title

Question Title

* 2. Where are you currently in your autoimmune health journey?

Question Title

* 3. How long did it take from when you first began experiencing symptoms to receiving an autoimmune diagnosis or a clear explanation for your symptoms?

Question Title

* 4. How many different healthcare professionals did you see during the diagnosis/evaluation process?

Question Title

* 5. How well do you feel your healthcare providers communicate and coordinate with one another?

Question Title

* 6. Have you ever felt responsible for acting as the “messenger” between different doctors or specialists?

Question Title

* 7. Which parts of managing your autoimmune care have been most difficult? (Being heard, finding specialists, getting a diagnosis, managing records, labs/results, tracking symptoms or flare triggers, medications, insurance, treatment plans, knowing who to contact, etc.)

Question Title

* 8. How do you currently keep track of your symptoms and flares? Select all that apply.

Question Title

* 9. How easy or difficult is it to recognize patterns or triggers associated with your flares?

Question Title

* 10. Have you ever experienced significant symptoms even when your lab results were normal or inconclusive?

Question Title

* 11. How easy is it for you to access and understand your lab results?

Question Title

* 12. How helpful would it be to see your symptoms, medications, lab results, and provider recommendations together in one place?

Question Title

* 13. How easy or difficult is it to keep track of your medications and changes to your treatment plan?

Question Title

* 14. When you experience a flare or new symptom, do you know which healthcare provider you should contact?

Question Title

* 15. Have you ever delayed contacting a healthcare provider because you weren’t sure who to contact, whether the symptom was important enough, or what to do next?

Question Title

* 16. How well do you feel your healthcare providers understand the complete picture of your health rather than focusing only on their individual specialty?

Question Title

* 17. What do you wish your healthcare providers better understood about living with an autoimmune condition? (Skip if you prefer not to say)

Question Title

* 18. What part of managing your autoimmune condition currently takes the most time or energy from you? (Skip if you prefer not to say)

Question Title

* 19. If you could change one thing about the healthcare experience for people with autoimmune conditions, what would it be? (Skip if you prefer not to say)

Question Title

* 20. If you'd like to specify, please list which autoimmune disorder(s) you have. Completely optional, so skip the question if you'd like. No pressure. Once again, all answers are anonymous. Thanks!

2. Where are you currently in your autoimmune health journey?

3. How long did it take from when you first began experiencing symptoms to receiving an autoimmune diagnosis or a clear explanation for your symptoms?

4. How many different healthcare professionals did you see during the diagnosis/evaluation process?

5. How well do you feel your healthcare providers communicate and coordinate with one another?

6. Have you ever felt responsible for acting as the “messenger” between different doctors or specialists?

7. Which parts of managing your autoimmune care have been most difficult? (Being heard, finding specialists, getting a diagnosis, managing records, labs/results, tracking symptoms or flare triggers, medications, insurance, treatment plans, knowing who to contact, etc.)

8. How do you currently keep track of your symptoms and flares? Select all that apply.

9. How easy or difficult is it to recognize patterns or triggers associated with your flares?

10. Have you ever experienced significant symptoms even when your lab results were normal or inconclusive?

11. How easy is it for you to access and understand your lab results?

12. How helpful would it be to see your symptoms, medications, lab results, and provider recommendations together in one place?

13. How easy or difficult is it to keep track of your medications and changes to your treatment plan?

14. When you experience a flare or new symptom, do you know which healthcare provider you should contact?

15. Have you ever delayed contacting a healthcare provider because you weren’t sure who to contact, whether the symptom was important enough, or what to do next?

16. How well do you feel your healthcare providers understand the complete picture of your health rather than focusing only on their individual specialty?

17. What do you wish your healthcare providers better understood about living with an autoimmune condition? (Skip if you prefer not to say)

18. What part of managing your autoimmune condition currently takes the most time or energy from you? (Skip if you prefer not to say)

19. If you could change one thing about the healthcare experience for people with autoimmune conditions, what would it be? (Skip if you prefer not to say)

20. If you'd like to specify, please list which autoimmune disorder(s) you have. Completely optional, so skip the question if you'd like. No pressure. Once again, all answers are anonymous. Thanks!