This Document Contains the Outline of the Survey Questionnaire

Online Resource 1

This document contains the outline of the survey questionnaire:

-----Demographics obtained from PatientsLikeMe profile -----

Age

Gender

Race

Location

Health Insurance

Education

Primary condition

List of all conditions

Duration since diagnosis

Duration since symptoms

-----Demographics asked in the survey -----

Employment

Marital Status

-----Managing your health: A little about you-----

We’d like to learn about how you managed your health both before and after you were diagnosed with your primary condition

1. Thinking about the time before your diagnosis, did you consider yourself to be someone who met health challenges head-on?

All the time
Most of the time
Some of the time
Rarely
Never

2. Prior to your diagnosis, how important was it for you to be involved inmaking decisions about your health with your health care providers (primary care, specialist or nurse practitioner)?

Very Important
Somewhat Important
Neutral
Somewhat Unimportant
Unimportant

3. Prior to your diagnosis, how often did you check your health status?

Daily
Weekly
Every couple of weeks
Once a month
A few times a year
Once a year
Less than once a year
Never

Checking health status can include activities like maintaining a health diary, weight tracking, blood pressure monitoring, routine examinations etc.

4. Since your diagnosis, how frequently do you visit a doctor or other health careproviders (primary care, specialist or nurse practitioner) for any type of consultation?

Once or more per week
Every couple of weeks
Once a month
A few times a year
Once every year
Less than once a year
Never

5. When you contact your doctor or other health care providers, what is your preferred way of communication?

Email
Online via patient portal (a secure patient website provided by the medical facility that requires a password)
Phone
Other (please specify)

6. What is your average health care cost per year (in dollars)?

a. Cost for premium (Please include only what you pay toward your premium, and not what your employer, government, or other sponsor pays)

Numeric free text

b. Cost for copays

Numeric free text

c. Cost for prescription medications

Numeric free text

d. Cost for medical devices

Numeric free text

e. Other costs

Numeric free text

7. How many days in the last month did you visit online websites (e.g., WebMD, Mayo Clinic, PatientsLikeMe) to get more health information?

Numeric open text, range 0-31

Managing your health: Your provider team

Everyone interacts with their care teams and health care providers a little bit differently. The next set of questions are about how you access and communicate with the team that takes care of your primary condition.

8. Please choose the type of health care provider who mainly treats your primary condition:

Primary care provider (PCP)/general physician
Specialist
Nurse practitioner
Other (please specify)

9. Please choose the gender of the health care provider who mainly treats your primary condition:

Male
Female

10. How did you choose your health care provider who mainly treats your primary condition? (select all that apply)

Health insurance list
Recommendation from friend
Recommendation from family member
Referred by other health care providers
Referred by hospital
Website reviews of providers
Others <please specify>

11. How long does it take you to get to the closest primary care center by car?

A primary care centeris usually your main point of continuing care within a health care system, and coordinates other specialist care that you need.

15 minutes or less

Between 15 to 30 minutes
Between 30 minutes and one hour
Between one and two hours
More than two hours
Don’t know

12. How long does it take you to get to the closest hospital by car?

15 minutes or less

Between 15 to 30 minutes
Between 30 minutes and one hour
Between one and two hours
More than two hours
Don’t know

13. Thinking about the time when you were diagnosed, did your health care provider give you information related to your medical condition during face-to-face visits?

Yes
No
Not sure

If yes to 13,

14. How much of the health information you received from health careproviders during your visits was clear and easy to understand?

All of the information
Most of the information
Some of the information
Very little
None

15. How often do you receive educational materials (brochures, handbooks etc.) about your medical condition from your health careproviders during your visits?

Every time
Often
Sometimes
Rarely
Never

If (not equal to ‘never’) to previous question

16. How much of the information that you receive in the educational materials during your visits is clear and easy to understand?

All of the information
Most of the information
Some of the information
Very little
None

17. What percentage of health information do you getfrom your team of health care providers?

Numeric open text, range: 0-100

18. What percentage of health information would you like to get from your team of health care providers?

Numeric open text, range: 0-100

19. In your opinion, to what extent do you think patients should have a say in their own health care?

A great deal
Quite a bit
Some
Not much
None

20. How much say do you think you have in making decisions about your treatment?

A great deal
Quite a bit
Some
Not much
None

21. How much do your treatment goalsmatch with your health care providers’ treatment plan?

A great deal
Quite a bit
Some
Not much
Not at all

22. To what extent do you feel your main health careprovidermonitors your on-going care?

To a great extent
Quite a bit
Somewhat
Very little
Not at all

23. How satisfied are you with the relationship you have with the health care provider who mainly treats your primary condition?

Very satisfied
Somewhat satisfied
Neutral
Somewhat dissatisfied
Very dissatisfied

24. Are you satisfied with the follow up care you receive from the health careproviderwho mainly treats your primary condition?

Very satisfied
Somewhat satisfied
Neutral
Somewhat dissatisfied
Very dissatisfied

25. Thinking of visits with the health care provider who treats your primary condition, do you think they spend too much, too little or just the right amount of time?

Much too much
Slightly too much
Just the tight amount
Slightly too little
Much too little

26. How much trust do you have in the competence of the health careprovider who mainly treats your primary condition?

A great deal of trust
A lot of trust
Somewhat
Very little trust
No trust at all

Managing your health: Getting the info you need

There are a lot of different places and ways to get health information besides talking to your provider. The following are questions about where you get the information you need and why.

27. How do you currently access your personal health information (e.g., test results and medical reports)? <select all that apply>

Paper copies
Patient portal (a secure patient website that requires a password)
Verbally from health care provider
Phone
Other <please specify>
Do not access

28. Of the health information about test results and medical reports you receive, how much of it is clear and easy to understand?

A great deal
Quite a bit
Some
Not much
None

If access to information in question 27,

29. How often do you read your test results or medical reports before going to face-to-face visits with your health careprovider?

All the time
Often
Sometimes
Rarely
Never

30. How often do you prepare questions that you want to ask your health careprovider during visits before your appointment?

All the time
Often
Sometimes
Rarely
Never

31. What types of educational materials do you read to learn more about your condition? <select all that apply>

Books
Journals
Magazines
Health websites (WebMD, MayoClinic)
PatientsLikeMe.com
Other <please specify>
Do not read educational materials (exclusive option)

32. What types of concerns lead you to seek educational materials about your health? <select all that apply>

Initial diagnosis
Cause of condition
Course and progression of condition
Treatment options
Signs and symptoms
Health monitoring
Other <please specify>

33. Of the educational information you read from these sources, how much of it is clear and easy to understand?

All of it
Quite a bit
Some
Not much
None

34. Please rate your level of agreement with the following statements? <matrix question>

I know how myprimary condition progresses over time
I am well-informed about the available treatment options for my primary health condition
I am aware of the warning signs/symptoms related to my primary health condition
I feel confident in managing any warning signs/symptoms of my primary health

Strongly agree
Agree
Neutral
Disagree
Strongly disagree

35. How frequently do you take your medication exactly as prescribed?

All the time
Often
Sometimes
Rarely
Never

36. How regularly do you track your health (e.g., maintaining a paper dairy or journal, computer-based tracking (e.g. excel), web-based online tracking, app on a smartphone, using a device to measure blood pressure)?

Many times a day
Once a day
A few times a week
At least once a week
Less than once a week
Never

Managing your health: Social support

Many of you share about the support needed and/or received from family, friends or others. The next questions are about where you look for social support and why.

37. Please rate your level of agreement with the following statements? <matrix question>

I have as much family support I need to help care for and manage my condition
I have as much support I need from friends to help care for and manage my condition
I rely on support from members of online communities similar to PatientsLikeMe to cope with my condition
I have shared my experience of managing my condition with other people with health problems

Strongly agree
Agree
Neutral
Disagree
Strongly disagree

38. Do you share experiences about your condition with other members of online communities like PatientsLikeMe?

Yes
No
Not sure

If yes,

39. How often do you share experiences about your condition with other members of online communities like PatientsLikeMe?

Daily
Weekly
Every couple of weeks
Once a month
Less than once a month
Never

40. Do you learn from the experiences of other members that are part of online communities likePatientsLikeMe?

Yes
No
Not sure

Managing your health: Day-to-day life and acceptance

Everyone’s condition impacts their daily life a little bit differently. These questions are about how your daily routine has been impacted and how that makes you feel.

41. To what extent do you understand the impact your condition will have on your day-to-day life (e.g., lifestyle changes, treatment adherence)?

A great deal
Quite a bit
Some
Not much
Not at all

42. Since your diagnosis, how often has living with your condition affected your activities of daily living?

All the time
Often
Sometimes
Rarely
Not at all

43. If your health care providers suggest lifestyle changes (e.g., dietary changes, changes in exercise regimen) to manage your condition, how much of it do you follow?

All of it
Quite a bit
Some
Not much
None at all
Does not apply

44. Please rate your level of agreement with the following statements? <matrix question>

I am content with my access to health care services
I am content with what it costs me to use health care services
I have never faced any delays in receiving care (e.g., delay in appointments, investigations)
I have access to preventive services whenever needed (e.g., blood pressure screening, diabetes screening, immunizations)
I am satisfied with the institution (e.g., hospital, primary care center) where I mainly receive health care
I am satisfied with continued care that I receive from my main health care provider
I am satisfied with my insurance provider
I am satisfied with the available educational resources about my condition
I am satisfied with the quality of available educational resources about my condition

Strongly agree
Agree
Neutral
Disagree
Strongly disagree
Don’t know/Does not apply

45. Please let us know if you have any final comments about the survey

Free text

Online Resource 2

List of all candidate items used in factor analysis. Removed items were based on factor loadings <0.4.

Item
Patient Empowerment Candidate Items (all 26 items)
1.How much of the health information you received from health care providers during your visits was clear and easy to understand?
2.How often do you receive educational materials (brochures, handbooks etc.) about your medical condition from your health care providers during your visits?
3.How much of the information that you receive in the educational materials during your visits is clear and easy to understand?
4.In your opinion, to what extent do you think patients should have a say in their own health care?
5.How much say do you think you have in making decisions about your treatment?
6.How much do your treatment goals match with your health care providers’ treatment plan?
7.To what extent do you feel your main health care provider monitors your on-going care?
8.How satisfied are you with the relationship you have with the health care provider who mainly treats your primary condition?
9.Are you satisfied with the follow up care you receive from the health care provider who mainly treats your primary condition?
10.How much trust do you have in the competence of the health care provider who mainly treats your primary condition?
11.Of the health information about test results and medical reports you receive, how much of it is clear and easy to understand?
12.How often do you read your test results or medical reports before going to face-to-face visits with your health care provider?
13.How often do you prepare questions that you want to ask your health care provider during visits before your appointment?
14.Of the educational information you read from these sources, how much of it is clear and easy to understand?
15.I know how my primary condition progresses over time
16.I am well-informed about the available treatment options for my primary health condition
17.I am aware of the warning signs/symptoms related to my primary health condition
18.I feel confident in managing any warning signs/symptoms of my primary health condition
19.How frequently do you take your medication exactly as prescribed?
20.I have as much family support I need to help care for and manage my condition
21.I have as much support I need from friends to help care for and manage my condition
22.I rely on support from members of online communities similar to PatientsLikeMe to cope with my condition
23.I have shared my experience of managing my condition with other people with health problems
24.To what extent do you understand the impact your condition will have on your day-to-day life (e.g., lifestyle changes, treatment adherence)?
25.Since your diagnosis, how often has living with your condition affected your activities of daily living?
26.If your health care providers suggest lifestyle changes (e.g., dietary changes, changes in exercise regimen) to manage your condition, how much of it do you follow?

Online Resource 3

Item Level Responses

Parkinson's Disease / MS / ALS / IPF / Diabetes Type 2 / RA / Bipolar Disorder Type 2 / Epilepsy / Migraine / MDD / SLE / Fibromyalgia / ME/CFS / Min / Max / Overall
Total Empowerment Score / 61.8 / 61.3 / 61.2 / 61.1 / 60.8 / 59.5 / 58.1 / 58.0 / 57.3 / 55.7 / 55.7 / 55.3 / 54.8 / 54.8 / 61.8 / N/A
Survey Item / Response / Percentage of Total
How satisfied are you with the relationship you have with the healthcare provider who treats your primary condition? / very satisfied or somewhat satisfied / 89% / 81% / 80% / 82% / 78% / 80% / 73% / 67% / 70% / 73% / 71% / 70% / 63% / 63% / 89% / 77%
Are you satisfied with the follow up care you receive from the healthcare provider who treats your primary condition? / very satisfied or somewhat satisfied / 83% / 78% / 77% / 80% / 76% / 75% / 73% / 67% / 60% / 64% / 64% / 62% / 51% / 51% / 83% / 71%
How much trust do you have in the competence of the healthcare provider who treats your primary condition? / a great deal of trust or a lot of trust / 86% / 80% / 81% / 81% / 72% / 80% / 80% / 67% / 68% / 65% / 70% / 63% / 53% / 53% / 86% / 73%
To what extent do you feel your main healthcare provider monitors your on-going care? / a great deal or quite a bit / 55% / 59% / 63% / 72% / 62% / 63% / 55% / 57% / 44% / 47% / 54% / 48% / 36% / 36% / 72% / 55%
How much do your treatment goals match with your healthcare providers’ treatment plan? / a great deal or quite a bit / 79% / 77% / 72% / 80% / 72% / 73% / 75% / 61% / 56% / 63% / 54% / 51% / 45% / 45% / 80% / 66%
How much of the health information you received from healthcare providers during your visits was clear and easy to understand? / all of the information or most of the information / 82% / 78% / 81% / 80% / 80% / 77% / 76% / 64% / 76% / 75% / 64% / 63% / 64% / 63% / 82% / 73%
How much say do you think you have in making decisions about your treatment? / a great deal or quite a bit / 88% / 88% / 93% / 81% / 75% / 80% / 85% / 79% / 86% / 74% / 74% / 69% / 70% / 69% / 93% / 80%
How much of the information that you receive in the educational materials during your visits is clear and easy to understand? / all of the information or most of the information / 80% / 77% / 79% / 71% / 72% / 73% / 85% / 63% / 72% / 65% / 52% / 60% / 59% / 52% / 85% / 70%