Qualitative Questionnaire

Your Support Group

1. What is the name of your patient support group?

2. In what way(s) are you involved with your patient support group?

You are a member
You run / work for the group
Other (please explain)

3. Do you attend a local support group?

No
Yes (where is it?)

Information, Communication and Education

4. Do you think you would benefit from more information about your genetic condition?

Yes
No (please go to next section)

5. What aspects of your genetic condition would you like to learn more about?

Information about genetic tests (if applicable)
Information about medication and treatments
Clinical research updates
Other (please explain)

6. When you receive information relating to your genetic condition, what form of communication do you find most useful?

Paper based text information (e.g. monthly newsletters and journals)
Computer based text information (e.g. using the internet, e-journals)
Attending discussion meetings with professionals who are knowledgeable about your condition
Joining on-line forums and sharing information electronically
Other (please explain)

Coordination And Integration Of Your Care

7. Where do you go for the treatment of your condition?

A local clinic
A regional based clinic
More than one OR None of the above (please explain)

8. Do you feel there is enough communication between the professionals involved in the care and management of your genetic condition?

Yes
No (please explain)

9. Have you ever been under the care of a multi-disciplinary team?

Yes
No (please go to next section)

10. What were/are the benefits?

11. What were/are the drawbacks?

Clinical Networks

Clinical networks can be described as linked groups of health professionals from across all sectors of health care (e.g. neurology, dermatology) who work in a coordinated manner, to ensure equitable provision of high quality and clinically effective services.

12. Do you think a network of clinicians who have experience and knowledge of treating and managing this genetic condition is a good idea?

Yes
No
Uncertain

13. Does your patient support group currently work with a network of clinicians who have expertise in the care management of this genetic condition?

Yes
No (goto question 19)
Uncertain (go to question 19)

14. Would you describe the network's remit as?

National
Local
Other (please explain)

15. How often does this network meet?

Once a month
Once a year
Twice a year
Other (please explain)

16. Where do these clinicians meet?

In a physical space (i.e. a centre of excellence, specialist clinics, patient support group)
In a virtual space (i.e. via the internet and satellite technologies)
Over the phone (i.e. conference calls)
Other (please explain)

17. Is there a lead person that coordinates communication within the network of clinicians?

No
Yes (please give details e.g. specialist nurse, consultant, a member of the patient group etc)

18. Do you know how this network is funded?

No
Yes (please explain)

19. Could you recommend any clinicians and/or healthcare professional who are interested in/or already working in this way? (please give name, speciality, postion and contact details)

Thank you. When you have completed the above questions - please click 'SEND'