children with DIABETES

Children with diabetes is conducting a survey to understand the state of diabetes care in the U.S. today, and any perceived inequities faced by people with diabetes. The results will be used by multiple industry participants to help set their priorities for areas to work on in improving the lives of patients with diabetes. As a result, we would greatly appreciate it if you would take the time to finish this brief survey. The results will be published in the future on the CWD website. Thank you.

1. What is your primary country of residence?

United States
Outside the United States

2. Who in your family has diabetes? 3. What is the age of the person(s) with diabetes? Please check all that apply.

Less than 6 years old
6 - 18 years old
19 - 40 years old
More than 40 years old

4. How long has this person(s) had diabetes?

Less than 1 year
1 to 3 years
3 to 5 years
More than 5 years

5. What type of health insurance does the person with diabetes in your family have?

	Employer-sponsored PPO	Employer-sponsored HMO	Medicare	Medicaid	Children's health insurance program	State-paid health insurance	No insurance
Primary coverage
Secondary coverage

6. How much do you generally pay for diabetes care annually out of pocket? 7. Approximately what percentage of your annual income do you spend on managing your diabetes or the diabetes of your loved one (drugs, co-pays, additional dietary needs)? 8. Please estimate what percentage of your annual out of pocket spend goes to each of the following items. Allocation should add to 100%.

Diabetes specific diet and exercise costs
Glucose testing strips
Pump
Pump management
Oral diabetes medications
Oral medications for other conditions (e.g., high cholesterol, hypertension, etc)
Insulin
Doctor copays
Other costs related to diabetes (please state)

9a. Has the person(s) with diabetes ever been denied coverage for diabetes related products by insurance providers?

Yes
No
I have never tried to obtain health insurance

9b. If yes, for what area(s) was coverage denied?

Limited or no reimbursement for insulin strips (i.e., need more strips than are reimbursed)
Insulin pump not approved
Insulin pump supplies
Doctor visits
Diabetes educator visits
Insulin or other medications
Other

9c. If you were denied coverage, were you able to contest the limitation and get the coverage changed?

Yes
No
Not applicable (did not contest)

10. How long is your typical diabetes related appointment with your diabetes team?

Under five minutes
5-10 minutes
10-15 minutes
More than 15 minutes

11. On a scale of 1-5, how well do you think your primary care provider understands the care needed for diabetes? 12a. Has the person with diabetes seen a specialist related to his/her diabetes needs (e.g., endocrinologist, CDE, ophthalmologist, podiatrists, etc.) in the last year?

Yes
No

12b. If no, what is the primary reason why the person with diabetes did not see a specialist?

Not referred / recommended by PCP; not needed due to good health status
Visit not reimbursed by insurance
Located too far
Unable to schedule appointment at convenient time
No specialist where we live
Other

13a. Has the person with diabetes been asked about their mental health (e.g., depression, anxiety) by your diabetes team in the last year?

Yes
No

13b. Has the person with diabetes been referred to a mental health expert?

Yes
No
Deemed not necessary
Yes, but I couldn't afford it so I didn't go

14. How many times in the course of a year does your insurance allow you to see a diabetes educator or attend a diabetes education course? 15. If the person with diabetes in your family is in school, how well established are the school's policies to help children with diabetes? 16. What elements of care are provided in the school that the person with diabetes attends?

Treatment for child when on field trips or other activities outside the classroom
Assistance in emergency situations
Defined individuals with knowledge and ability to help if needed (e.g., on-site nurses)
Teachers and staff who understand processes for regular treatment in the classroom
None
Other

17. How many schools did you have to consider before finding one that could appropriately care for the person with diabetes?

One - first school
2
3
4 or more

18. Has the person with diabetes been denied life insurance or offered life insurance at a rate too expensive to afford? 19. When the person with diabetes has applied for life insurance, did the policy take into account individual diabetes conditions (e.g., history of care, HbA1c levels, cholesterol levels, blood pressure levels)?

Yes
No
Don't know
Have not applied because the person with diabetes does not need life insurance
Have not applied because person with diabetes is afraid of being turned down

20. Has the person with diabetes ever experienced any of the following forms of discrimination?

Peer related (e.g., teasing)
Discrimination by police, law enforcement, or other public official
Work related
Other

21. How well do you understand the self-management practices necessary to appropriately care for your (or your child's) diabetes? 22. What would help you to better self-manage your diabetes?

23. We are trying to assess where the greatest inequities lie in diabetes management and care. We would appreciate your perspectives. Please rank what you believe are the top three areas of inequity in the U.S.

	Out of pocket costs represent a major cost burden for patients relative to income	Limited reimbursement by payors for on-going management of diabetes (i.e., routine medical care, preventative care)	Total lack of insurance for certain populations	Standards of care (e.g., when to escalate therapy, what associated conditions to monitor, how often to test blood sugar, diet not well defined)	Primary care providers do not follow standards of care	Hard to see diabetes specialists (e.g., endocrinologists / diabetes educators)	Lack of patient awareness about seriousness of diabetes and its complications	Lack of patient understanding /education of self-management practices	Discrimination in the workplace	Inadequate accommodations in school	Discrimination in public life (e.g., getting insurance)
#1
#2
#3

24. If you could make one suggestion to improve the lives of people with diabetes, what would it be?



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