ACHA Survey

Please help us serve you better.

14% of survey complete.

Question Title

1. Are you currently a Member of the Adult Congenital Heart Association?

Yes - please do not take this survey again if you have already completed it.

I don't know

Question Title

2. Which one of the following best represents you? (Required.)

I have Congenital Heart Disease (CHD)

I am a parent of someone with CHD

I am a spouse of someone with CHD

I am a sibling of someone with CHD

I am a family member of someone with CHD

I am a friend of someone with CHD

I am a medical professional

Question Title

3. Which resources do you access for information related to CHD? [Check all that apply] (Required.)

My doctor

Another healthcare provider (Nurse, PA, NP, etc)

Hospital websites

ACHA

Government websites (such as NIH or CDC)

Social media

Anywhere I can find information on the internet

Other CHD related organizations (please specify)

Question Title

4. Of the resources you selected in Question 2, which one resource would you consider to be your primary “go-to” resource? (Required.)

My doctor

Another healthcare provider (Nurse, PA, NP, etc)

Hospital websites

ACHA

Government websites (such as NIH or CDC)

Social media

Anywhere I can find information on the internet

Other CHD Organizations (please specify)

Question Title

5. How did you initially learn about ACHA? (Required.)

I found ACHA through an internet search

My doctor/clinic told me about ACHA

I found printed material at my doctor's office

A friend told me about ACHA

A news story

A link from another organization (please tell us which organization in the Other section below)

At a Congenital Heart Walk

At an ACHA Regional Event

Other (please specify)

Question Title

6. What motivated your interest in finding information about CHD that resulted in you finding ACHA? (Required.)

My (or my family member’s) CHD had been recently diagnosed

A medical event related to my (or my family member’s) previously diagnosed/treated CHD had recently occurred

I just wanted to learn more about my (or my family member’s) CHD

My doctor suggested I learn more about my (or my family member’s) CHD

Other (please specify)

Question Title

7. Below is a list of ACHA programs (or programs that ACHA is a partner in) and resources. Please tell us how familiar you are with each one using a scale of 1 to 5, where 1 is Not Familiar at All and 5 is Very Familiar. (Required.)

	Not at All Familiar (1)	A little familiar (2)	Somewhat Familiar (3)	Familiar (4)	Very Familiar (5)
ACHA Accreditation of ACHD clinics	ACHA Accreditation of ACHD clinics Not at All Familiar (1)	ACHA Accreditation of ACHD clinics A little familiar (2)	ACHA Accreditation of ACHD clinics Somewhat Familiar (3)	ACHA Accreditation of ACHD clinics Familiar (4)	ACHA Accreditation of ACHD clinics Very Familiar (5)
ACHA Discussion Forums	ACHA Discussion Forums Not at All Familiar (1)	ACHA Discussion Forums A little familiar (2)	ACHA Discussion Forums Somewhat Familiar (3)	ACHA Discussion Forums Familiar (4)	ACHA Discussion Forums Very Familiar (5)
ACHA Heart to Heart Ambassadors	ACHA Heart to Heart Ambassadors Not at All Familiar (1)	ACHA Heart to Heart Ambassadors A little familiar (2)	ACHA Heart to Heart Ambassadors Somewhat Familiar (3)	ACHA Heart to Heart Ambassadors Familiar (4)	ACHA Heart to Heart Ambassadors Very Familiar (5)
ACHA National Conference	ACHA National Conference Not at All Familiar (1)	ACHA National Conference A little familiar (2)	ACHA National Conference Somewhat Familiar (3)	ACHA National Conference Familiar (4)	ACHA National Conference Very Familiar (5)
ACHA Actelion Fellowship Program	ACHA Actelion Fellowship Program Not at All Familiar (1)	ACHA Actelion Fellowship Program A little familiar (2)	ACHA Actelion Fellowship Program Somewhat Familiar (3)	ACHA Actelion Fellowship Program Familiar (4)	ACHA Actelion Fellowship Program Very Familiar (5)
Advocacy (Lobby) Day/Legislative Conference	Advocacy (Lobby) Day/Legislative Conference Not at All Familiar (1)	Advocacy (Lobby) Day/Legislative Conference A little familiar (2)	Advocacy (Lobby) Day/Legislative Conference Somewhat Familiar (3)	Advocacy (Lobby) Day/Legislative Conference Familiar (4)	Advocacy (Lobby) Day/Legislative Conference Very Familiar (5)
Congenital Heart Walk	Congenital Heart Walk Not at All Familiar (1)	Congenital Heart Walk A little familiar (2)	Congenital Heart Walk Somewhat Familiar (3)	Congenital Heart Walk Familiar (4)	Congenital Heart Walk Very Familiar (5)
Heart to Heart Where You Live Regional Events	Heart to Heart Where You Live Regional Events Not at All Familiar (1)	Heart to Heart Where You Live Regional Events A little familiar (2)	Heart to Heart Where You Live Regional Events Somewhat Familiar (3)	Heart to Heart Where You Live Regional Events Familiar (4)	Heart to Heart Where You Live Regional Events Very Familiar (5)
Online Clinic Directory	Online Clinic Directory Not at All Familiar (1)	Online Clinic Directory A little familiar (2)	Online Clinic Directory Somewhat Familiar (3)	Online Clinic Directory Familiar (4)	Online Clinic Directory Very Familiar (5)
PATCH program (Provider Action for Treating Congenital Hearts)	PATCH program (Provider Action for Treating Congenital Hearts) Not at All Familiar (1)	PATCH program (Provider Action for Treating Congenital Hearts) A little familiar (2)	PATCH program (Provider Action for Treating Congenital Hearts) Somewhat Familiar (3)	PATCH program (Provider Action for Treating Congenital Hearts) Familiar (4)	PATCH program (Provider Action for Treating Congenital Hearts) Very Familiar (5)
Personal Health Passport	Personal Health Passport Not at All Familiar (1)	Personal Health Passport A little familiar (2)	Personal Health Passport Somewhat Familiar (3)	Personal Health Passport Familiar (4)	Personal Health Passport Very Familiar (5)
Printed material and resources	Printed material and resources Not at All Familiar (1)	Printed material and resources A little familiar (2)	Printed material and resources Somewhat Familiar (3)	Printed material and resources Familiar (4)	Printed material and resources Very Familiar (5)
Webinars	Webinars Not at All Familiar (1)	Webinars A little familiar (2)	Webinars Somewhat Familiar (3)	Webinars Familiar (4)	Webinars Very Familiar (5)

Question Title

8. How often (if ever) have you used (or participated in) each of the following ACHA resources or programs in the past 12 months? (Required.)

	2-3 Times	Never	Once	4-5 Times	More than 5 Times
Webinars	Webinars 2-3 Times	Webinars Never	Webinars Once	Webinars 4-5 Times	Webinars More than 5 Times
Regional Events (2014 and 2015)	Regional Events (2014 and 2015) 2-3 Times	Regional Events (2014 and 2015) Never	Regional Events (2014 and 2015) Once	Regional Events (2014 and 2015) 4-5 Times	Regional Events (2014 and 2015) More than 5 Times
National Conference (2014 Conference)	National Conference (2014 Conference) 2-3 Times	National Conference (2014 Conference) Never	National Conference (2014 Conference) Once	National Conference (2014 Conference) 4-5 Times	National Conference (2014 Conference) More than 5 Times
ACHA Discussion Forum	ACHA Discussion Forum 2-3 Times	ACHA Discussion Forum Never	ACHA Discussion Forum Once	ACHA Discussion Forum 4-5 Times	ACHA Discussion Forum More than 5 Times
Resources from Advocacy (Lobby) Day/Legislative Conference	Resources from Advocacy (Lobby) Day/Legislative Conference 2-3 Times	Resources from Advocacy (Lobby) Day/Legislative Conference Never	Resources from Advocacy (Lobby) Day/Legislative Conference Once	Resources from Advocacy (Lobby) Day/Legislative Conference 4-5 Times	Resources from Advocacy (Lobby) Day/Legislative Conference More than 5 Times
Online Clinic Directory	Online Clinic Directory 2-3 Times	Online Clinic Directory Never	Online Clinic Directory Once	Online Clinic Directory 4-5 Times	Online Clinic Directory More than 5 Times
Personal Health Passport	Personal Health Passport 2-3 Times	Personal Health Passport Never	Personal Health Passport Once	Personal Health Passport 4-5 Times	Personal Health Passport More than 5 Times
ACHA Heart to Heart Ambassadors	ACHA Heart to Heart Ambassadors 2-3 Times	ACHA Heart to Heart Ambassadors Never	ACHA Heart to Heart Ambassadors Once	ACHA Heart to Heart Ambassadors 4-5 Times	ACHA Heart to Heart Ambassadors More than 5 Times
Printed material and resources	Printed material and resources 2-3 Times	Printed material and resources Never	Printed material and resources Once	Printed material and resources 4-5 Times	Printed material and resources More than 5 Times
Congenital Heart Walk	Congenital Heart Walk 2-3 Times	Congenital Heart Walk Never	Congenital Heart Walk Once	Congenital Heart Walk 4-5 Times	Congenital Heart Walk More than 5 Times

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9. Have you personally recommended ACHA to another person? (Required.)

Yes

If yes, please tell us about the circumstances of your choice above. For example: "I shared the information about ACHA with a friend who also has CHD."

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10. If you have not recommended ACHA to another person, how likely are you to do so in the future?

Very likely

Somewhat likely

Unlikely

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11. Have you ever shared ACHA-provided information with others? (Required.)

Yes

If you, please tell us about the circumstances of your choice above. For example: "I shared the ACHA Webinar schedule with a friend who also has CHD."

Question Title

12. Have you financially supported ACHA in the past? (select all that apply) (Required.)

Yes, through financial support directly to ACHA

Yes, through the Congenital Heart Walk

Other (please specify)

Question Title

13. What are some of the biggest challenges you (or your family member) face with CHD care where ACHA could offer assistance in the future? [Check all that apply] (Required.)

Access to quality information about CHD in general

Finding quality information about my own (or my family member’s) particular CHD

Where to find quality medical care

Finding CHD clinics while traveling

Finding support groups

Finding quality information about medications or taking medications

Finding information about CHD related mental health conditions and where to find treatment for them

Finding information about exercise

Finding information about family planning concerns

Getting clear information because much of the information i get is mixed or conflicting.

Getting access to CHD specialists

Getting reliable or helpful information about insurance coverage

Other (please specify)

Question Title

14. Of those selected above which 1 (or 2 at most) are most important to you? (Required.)

Access to quality information about CHD in general

Finding quality information about my own (or my family member’s) particular CHD

Where to find quality medical care

Finding CHD clinics while traveling

Finding support groups

Finding quality information about medications or taking medications

Finding information about CHD related mental health conditions and where to find treatment for them

Finding information about exercise

Finding information about family planning concerns

Getting clear information because much of the information i get is mixed or conflicting.

Getting access to CHD specialists

Getting reliable or helpful information about insurance coverage

The item added to the "other" field above

Question Title

15. Please rate each of the following activities in terms of the importance to you (or your family member) in managing your (or their) CHD. (Required.)

	Not at All Important	Slightly Important	Somewhat Important	Important	Very Important
Opportunities for social interaction with others with CHD	Opportunities for social interaction with others with CHD Not at All Important	Opportunities for social interaction with others with CHD Slightly Important	Opportunities for social interaction with others with CHD Somewhat Important	Opportunities for social interaction with others with CHD Important	Opportunities for social interaction with others with CHD Very Important
Access to qualified medical staff	Access to qualified medical staff Not at All Important	Access to qualified medical staff Slightly Important	Access to qualified medical staff Somewhat Important	Access to qualified medical staff Important	Access to qualified medical staff Very Important
Affordability of qualified medical care	Affordability of qualified medical care Not at All Important	Affordability of qualified medical care Slightly Important	Affordability of qualified medical care Somewhat Important	Affordability of qualified medical care Important	Affordability of qualified medical care Very Important
Keeping up to date on the latest medical advances	Keeping up to date on the latest medical advances Not at All Important	Keeping up to date on the latest medical advances Slightly Important	Keeping up to date on the latest medical advances Somewhat Important	Keeping up to date on the latest medical advances Important	Keeping up to date on the latest medical advances Very Important
Knowledgeable support for family members	Knowledgeable support for family members Not at All Important	Knowledgeable support for family members Slightly Important	Knowledgeable support for family members Somewhat Important	Knowledgeable support for family members Important	Knowledgeable support for family members Very Important
CHD research	CHD research Not at All Important	CHD research Slightly Important	CHD research Somewhat Important	CHD research Important	CHD research Very Important

Other (please specify)

Question Title

* 1. Are you currently a Member of the Adult Congenital Heart Association?

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* 2. Which one of the following best represents you? (Required.)

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* 3. Which resources do you access for information related to CHD? [Check all that apply] (Required.)

Question Title

* 4. Of the resources you selected in Question 2, which one resource would you consider to be your primary “go-to” resource? (Required.)

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* 5. How did you initially learn about ACHA? (Required.)

Question Title

* 6. What motivated your interest in finding information about CHD that resulted in you finding ACHA? (Required.)

Question Title

* 7. Below is a list of ACHA programs (or programs that ACHA is a partner in) and resources. Please tell us how familiar you are with each one using a scale of 1 to 5, where 1 is Not Familiar at All and 5 is Very Familiar. (Required.)

Question Title

* 8. How often (if ever) have you used (or participated in) each of the following ACHA resources or programs in the past 12 months? (Required.)

Question Title

* 9. Have you personally recommended ACHA to another person? (Required.)

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* 10. If you have not recommended ACHA to another person, how likely are you to do so in the future?

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* 11. Have you ever shared ACHA-provided information with others? (Required.)

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* 12. Have you financially supported ACHA in the past? (select all that apply) (Required.)

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* 13. What are some of the biggest challenges you (or your family member) face with CHD care where ACHA could offer assistance in the future? [Check all that apply] (Required.)

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* 14. Of those selected above which 1 (or 2 at most) are most important to you? (Required.)

Question Title

* 15. Please rate each of the following activities in terms of the importance to you (or your family member) in managing your (or their) CHD. (Required.)

1. Are you currently a Member of the Adult Congenital Heart Association?

2. Which one of the following best represents you? (Required.)

3. Which resources do you access for information related to CHD? [Check all that apply] (Required.)

4. Of the resources you selected in Question 2, which one resource would you consider to be your primary “go-to” resource? (Required.)

5. How did you initially learn about ACHA? (Required.)

6. What motivated your interest in finding information about CHD that resulted in you finding ACHA? (Required.)

7. Below is a list of ACHA programs (or programs that ACHA is a partner in) and resources. Please tell us how familiar you are with each one using a scale of 1 to 5, where 1 is Not Familiar at All and 5 is Very Familiar. (Required.)

8. How often (if ever) have you used (or participated in) each of the following ACHA resources or programs in the past 12 months? (Required.)

9. Have you personally recommended ACHA to another person? (Required.)

10. If you have not recommended ACHA to another person, how likely are you to do so in the future?

11. Have you ever shared ACHA-provided information with others? (Required.)

12. Have you financially supported ACHA in the past? (select all that apply) (Required.)

13. What are some of the biggest challenges you (or your family member) face with CHD care where ACHA could offer assistance in the future? [Check all that apply] (Required.)

14. Of those selected above which 1 (or 2 at most) are most important to you? (Required.)

15. Please rate each of the following activities in terms of the importance to you (or your family member) in managing your (or their) CHD. (Required.)