CARES Foundation

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 *

Children's Hospital Los Angeles/USC/Cedars Sinai
Cook Children's Health Care System
Children’s Hospital of Philadelphia/Penn Med – Philadelphia, PA
New York-Presbyterian/Weill Cornell Medical Center
Riley Hospital for Children at Indiana University Health
Rutgers-RWJMS, Child Health Center of New Jersey
Seattle Children's Hospital/University of Washington
UT Southwestern Medical Center/Children's Medical Center Dallas

Individual completing this survey is: *

Patient
Parent/Caregiver

Patient Information

Gender *

Female
Male
Other

CAH Type *

Non-Classical CAH
Classical CAH
Unknown
Other

Age *

Infant (under 1 year)
Child (1-18 years)
Adult (over 18 years)

State you live in: *

Did you visit as a *

New patient
Existing patient

Date of your first consult *

How did you hear about the Center? *

Was your visit related to a surgical procedure? *

Yes
No

Which doctor did you see at this visit? *

Pediatric Endocrinologist
Adult Endocrinologist
Reproductive Endocrinologist
Other

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? *

Yes
No

Do you know how to contact the care coordinator? *

Yes
No

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? *

Yes
No

If "yes", what type of specialists?

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

Yes
No
I do not know

Are you promptly informed of test results? *

Yes
No

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

Yes
No

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

Yes
No

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

Yes
No

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

Yes
No

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

Yes
No

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)? *

Yes
No

Do you think you could respond effectively:

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

Yes
No

when interacting with other healthcare professionals? *

Yes
No

Teaching and Training

Have you been provided with general information on CAH? *

Yes
No

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

Yes
No

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

Yes
No

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)? *

Yes
No

Environment

Is the facility clean? *

Yes
No

Were you able to find the office easily? *

Yes
No

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? *

Yes
No
Does not apply

How long did you wait between appointments/tests?

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

Yes
No
Does not apply

Were they prepared for you? *

Yes
No
Does not apply

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

Yes
No

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? *

Yes
No

Please explain:

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

Yes
No

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!

Thank you for participating!

Timeout Warning

Patient Survey

Patient Information

Care Coordination

/Transition of Care

Advocacy

Teaching and Training

Environment

Future Needs

Thank you for participating!