CCC Survey

Patient Survey

By completing this survey, you are giving consent for CARES Foundation to review your responses for the purposes of continuing evaluation of the CARES Foundation-designated center. This information will not be shared with anyone outside of this Center or CARES Foundation.

Please select Center where you received care *

Individual completing this survey is: *

Patient Information

Gender *

CAH Type *

Age *

State you live in: *

Did you visit as a *

Date of your first consult *

How did you hear about the Center? *

Was your visit related to a surgical procedure? *

Which doctor did you see at this visit? *

If you chose "Other" for the question above, please specify

Care Coordination

/Transition of Care

Do you know who the Care Coordinator (clinic coordinator/patient care assistant) is? *

Do you know how to contact the care coordinator? *

How long does it take to have your phone calls or emails returned by the care coordinator/nurse/physician? *

Has the care coordinator provided you with information on making appointments with other specialists/services? *

If "yes", what type of specialists?

Has the Center provided your primary care physician with a summary of your consultation? *

Are you promptly informed of test results? *

Have you been informed about what specialists and services are available to you? *

Have you been told that you need to see other specialists? *

If "yes", did the care coordinator make the appointment for you? *

Has your psychological health been evaluated by a psychiatrist or psychologist? *

If you are in the process of transitioning to an adult provider, did the coordinator assist you with the transition? *

Please describe the process: *

Advocacy

Has the Care Coordinator or other team member provided educational or emotional support such as support group referrals and access to educational resources (i.e. CARES Foundation, others affected by CAH, publications, internet resources)? *

Do you think you could respond effectively:

during an emergency (adrenal crisis, dealing with ER and EMS personnel)? *

when interacting with other healthcare professionals? *

Teaching and Training

Have you been provided with general information on CAH? *

Were you taught how to and when to administer Solu-Cortef (hydrocortisone) injection? *

If "yes", did you have hands-on practice at teaching session?

How often have you been taught how to give the injection since the initial training?

Have you been provided resources for education and other topics (i.e. planning for school and camp, transition to adult care providers, sexuality, fertility, and other concerns)? *

Environment

Is the facility clean? *

Were you able to find the office easily? *

How long did you wait for the doctor? *

How much time did the doctor spend with you? *

Do you feel you had adequate time with the doctor? *

Were all your questions/concerns answered and/or addressed? *

If no, what are they?

If you had more than one appointment or test on the same day, were they well-coordinated? *

How long did you wait between appointments/tests?

Did the other specialists/departments know you were coming? *

Were they prepared for you? *

After the appointment, was follow-up needed (another appointment or results)? *

If "yes", how long before you were contacted?

Speaking generally, how satisfied were you with your experience(s) at the Comprehensive Care Center? What has been going well? What would you like to see improved? *

Future Needs

Will you continue to use the Center in the future? *

Please explain:

May CARES Foundation contact you about your responses to your experience? *

If yes, please provide the following information:

Full Name:

Address:

Email address:

Phone number:

If you have not joined CARES, we would love to have you as a part of our community. You receive information on the latest in CAH research, medication recalls, conferences, support activities and more. Go to www.caresfoundation.org and click on JOIN OUR COMMUNITY!