Royal Osteoporosis Society - Online Forum Survey

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* 1. How long have you been a member of the Bone Health forum (Health Unlocked)?

< 1 month

1-5 months

6-18 months

more that 18 months

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* 2. How old are you?

29 or under

30-49

50-59

60-69

70-79

80 or over

I would prefer not to answer

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* 3. What is your gender?

Female

Male

Prefer not to answer

Prefer to self-describe (below)

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* 4. Which race/ethnicity best describes you? (Please choose only one.)

White British / White Other

Black / African / Caribbean / Black British

Asian / Asian British

Mixed / Multiple Ethnic Groups

Any other ethnic group

I don't think of myself as any of these

Prefer not to say

Another race or ethnicity (please specify)

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* 5. What is your total household income?

Less than £20,000

£20,000 to £34,999

£35,000 to £49,999

£50,000 to £74,999

£75,000 to £99,999

Above £100,000

Prefer not to say

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* 6. What is the first part of your postcode? (This information is used to help map where users are from but it is anonymous and won't be used to contact you)

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* 7. Which of these best describes you...

I have a diagnosis of osteoporosis - no fractures

I have a diagnosis of osteoporosis - with fractures

I'm interested in bone health

I am a carer/ friend or relative of someone affected by osteoporosis

I’m a health care professional

Other (please specify)

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* 8. How serious has the impact of osteoporosis and fractures been on your life? Please answer the following...

	Not at all serious	Somewhat serious	Serious	Very serious	N/A
The physical impact (pain and/ or disability)	The physical impact (pain and/ or disability) Not at all serious	The physical impact (pain and/ or disability) Somewhat serious	The physical impact (pain and/ or disability) Serious	The physical impact (pain and/ or disability) Very serious	The physical impact (pain and/ or disability) N/A
The impact on your mental health	The impact on your mental health Not at all serious	The impact on your mental health Somewhat serious	The impact on your mental health Serious	The impact on your mental health Very serious	The impact on your mental health N/A
The impact on your ability to carry out day to day activities (hobbies, chores, work)	The impact on your ability to carry out day to day activities (hobbies, chores, work) Not at all serious	The impact on your ability to carry out day to day activities (hobbies, chores, work) Somewhat serious	The impact on your ability to carry out day to day activities (hobbies, chores, work) Serious	The impact on your ability to carry out day to day activities (hobbies, chores, work) Very serious	The impact on your ability to carry out day to day activities (hobbies, chores, work) N/A
the impact on your social life and relationships	the impact on your social life and relationships Not at all serious	the impact on your social life and relationships Somewhat serious	the impact on your social life and relationships Serious	the impact on your social life and relationships Very serious	the impact on your social life and relationships N/A
The impact on your overall quality of your life	The impact on your overall quality of your life Not at all serious	The impact on your overall quality of your life Somewhat serious	The impact on your overall quality of your life Serious	The impact on your overall quality of your life Very serious	The impact on your overall quality of your life N/A

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* 9. Do you consider yourself to be disabled?

Yes

How would you describe your disability?

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* 10. How did you find the forum?

Social media

Google search

Through another organisation

Word of mouth - friends and family

Healthcare Professional

Other (please specify)

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* 11. Did you have any contact with the Royal Osteoporosis Society (ROS) before joining the forum? Please select all that apply

I had called the Helpline

Viewed information on the website or read an ROS printed leaflet

Follow ROS on social media

Attended an ROS Bone Matters event (online information session)

Fundraised for the ROS

Attended a local support group

Subscribed to the ROS mailing list

I am an ROS member

No previous contact

Other

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* 12. What were your reasons for joining the forum?

I wanted support from others in a similar situation

I wanted to get advice and information

I wanted to share my story

I wanted to feel less alone and part of a community

Something else… please state

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* 13. Can you tell us why you chose to use the online forum, compared with other types of help e.g. a helpline, local group or social media? Please select all that apply

It’s easy to access at any time I want

I like getting support and information online

I can’t access support locally

I prefer to get information from ‘peers’ rather than ‘experts’

I like being anonymous (unlike Facebook)

I don’t use social media platforms

I feel the information is less likely to be biased and independent

No preference, I just came across it/ I didn’t know about other sources of support

Other (please specify)

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* 14. How satisfied are you with the forum? (Out of 5 stars)

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* 15. Please state whether you agree/ disagree with the following statements?

The forum helped me to...

	Agree	Disagree	Not applicable
feel more confident about managing osteoporosis and its impact	feel more confident about managing osteoporosis and its impact Agree	feel more confident about managing osteoporosis and its impact Disagree	feel more confident about managing osteoporosis and its impact Not applicable
increase my knowledge of osteoporosis and how to live well	increase my knowledge of osteoporosis and how to live well Agree	increase my knowledge of osteoporosis and how to live well Disagree	increase my knowledge of osteoporosis and how to live well Not applicable
have informed conversations with health professionals	have informed conversations with health professionals Agree	have informed conversations with health professionals Disagree	have informed conversations with health professionals Not applicable
feel less isolated and better connected to others	feel less isolated and better connected to others Agree	feel less isolated and better connected to others Disagree	feel less isolated and better connected to others Not applicable
cope with the psychological impact of osteoporosis	cope with the psychological impact of osteoporosis Agree	cope with the psychological impact of osteoporosis Disagree	cope with the psychological impact of osteoporosis Not applicable
to make informed decisions about my care	to make informed decisions about my care Agree	to make informed decisions about my care Disagree	to make informed decisions about my care Not applicable
helped me make positive lifestyle changes	helped me make positive lifestyle changes Agree	helped me make positive lifestyle changes Disagree	helped me make positive lifestyle changes Not applicable

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* 16. Can you tell us in your own words how the forum helps you and what benefits you get from it

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* 17. How could the forum improve to better meet your needs? Is there anything about the forum that you don't like?

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* 18. We want to develop our peer support services in the future and would like to get your feedback on these ideas. Please select all ideas that you would prioritise:

Separate "boards" for particular groups of people e.g. those with spinal fractures or younger women

Areas to discuss certain topics e.g. medications or exercise

Opportunities to have questions answered by nurses on the forum

One-to-one osteoporosis befriending services (by phone or online)

Small online group chat sessions

More information from ROS on the forum

Moderation from peers / others who are living with osteoporosis

Moderation from nurses and clinicians

Any other ideas for future development here?

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* 19. We’d like to stay in touch so we can bring together a group of users to help us develop the forum, would you be happy to share your email address so we can contact you? (held in accordance with our privacy policy).

Name

Email Address

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* 1. How long have you been a member of the Bone Health forum (Health Unlocked)?

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* 2. How old are you?

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* 3. What is your gender?

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* 4. Which race/ethnicity best describes you? (Please choose only one.)

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* 5. What is your total household income?

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* 6. What is the first part of your postcode? (This information is used to help map where users are from but it is anonymous and won't be used to contact you)

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* 7. Which of these best describes you...

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* 8. How serious has the impact of osteoporosis and fractures been on your life? Please answer the following...

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* 9. Do you consider yourself to be disabled?

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* 10. How did you find the forum?

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* 11. Did you have any contact with the Royal Osteoporosis Society (ROS) before joining the forum? Please select all that apply

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* 12. What were your reasons for joining the forum?

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* 13. Can you tell us why you chose to use the online forum, compared with other types of help e.g. a helpline, local group or social media? Please select all that apply

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* 14. How satisfied are you with the forum? (Out of 5 stars)

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* 15. Please state whether you agree/ disagree with the following statements? The forum helped me to...

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* 16. Can you tell us in your own words how the forum helps you and what benefits you get from it

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* 17. How could the forum improve to better meet your needs? Is there anything about the forum that you don't like?

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* 18. We want to develop our peer support services in the future and would like to get your feedback on these ideas. Please select all ideas that you would prioritise:

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* 19. We’d like to stay in touch so we can bring together a group of users to help us develop the forum, would you be happy to share your email address so we can contact you? (held in accordance with our privacy policy).

* 15. Please state whether you agree/ disagree with the following statements?

The forum helped me to...