Emergency Room Treatment Survey

This survey is for those who have visited an Emergency Room or Urgent Care Facility during an impending or full blown Adrenal Crisis. For the best results, please answer questions carefully especially 10 and 11. AIU will keep your answers anonymous................Please don't fill this out unless you or your loved one has been seen in an Emergency Room Setting during and impending or full blown adrenal crisis.

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* 1. On who's behalf, are you filling out this survey. (please fill out for one person only)

Myself, I am Adrenal Insufficient

My child, I am the parent guardian of a child with Adrenal Insufficiency

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* 2. How old is the subject of this survey? (the person you are answering the questions about)

0-5

6-12

13-17

18-25

26-40

40 and above

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* 3. How many times has this person been to an Emergency Room during an impending or full blown adrenal crisis?

1-3

4-6

7-10

11 or more

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* 4. How many times was the emergency glucocorticoid prescribed by your physician given prior to arrival at the ER?

Solu-Cortef® Solu-Medrol® etc?

never

1-3

4-6

7-10

11 or more

My doctor has not prescribed an emergency glucocorticoid

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* 5. From the time crisis symptoms began, how long was it until you or your loved one arrived at the Emergency Room?

5 - 10 minutes

10 - 20 minutes

20 - 30 minutes

30 minutes to one hour

1 - 3 hours

3 hours or more

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* 6. If you did not arrive at the Emergency Room within 30 minutes of the onset adrenal crisis symptoms, please tell us why? (check all that apply)

An emergency injection had already be given and we were not sure if we still needed to go to the ER.

I/we were waiting for our regular physician to call us back.

I/we didn't realize how quickly symptoms would come on and waited too long.

We don't have insurance and were worried about the cost.

The distance to travel (or traffic) was more than 30 minutes.

I/we have been to the Emergency Room for adrenal crisis before, but not been treated properly.

I was alone and had no means of transportation to get there.

Other visits to the ER have resulted in accusations of being "a drug seeker, mentally impaired, etc." and I didn't want to go through that again.

Fear

Other (please specify)

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* 7. How many times did you arrive at the Emergency Room via ambulance?

Never

1-3

4-6

7-10

11 or more

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* 8. Thinking of each time an Emergency Room visit was necessary.......How many times did ER Personal have knowledge of Adrenal Insufficiency and understand that immediate action was necessary?

0 Never

1-3

4-6

7-10

11 or more

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* 9. How long did it take for ER Personnel to administer treatment for you or your loved ones adrenal crisis?

30 minutes or less (please skip to question 11)

30 to 90 minutes (please continue to question 10)

90 minutes or more (please continue to question 10)

Treatment for the adrenal crisis was never given (please continue to question 10)

PLEASE BE CAREFUL WITH QUESTIONS 10 AND 11 THEY ARE VITAL TO OUR GRANT!!!

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* 10. STOP...please read carefully.....Only answer this question if it took more than 30 minutes for you to receive treatment in the ER..........When treatment for the adrenal crisis WAS NOT GIVEN within 30 minutes upon arrival at the Emergency Room how long did you or your loved one remain in the hospital? (If you answer this question please skip question 11....go directly to question 12)

Less than 2 hours

Between 2 - 5 hours

6 - 12 hours

12 - 24 hours

More than one day

Other (please specify)

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* 11. STOP please read carefully.....Only answer this question if you received treatment within 30 minutes! When treatment for the adrenal crisis WAS GIVEN within 30 minutes upon arrival at the Emergency Room how long did you or your loved one remain in the hospital?

Less than 2 hours

Between 2 - 5 hours

6 - 12 hours

12 - 24 hours

More than one day

Other (please specify)

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* 12. What were the factors that you believe helped in receiving treatment in the Emergency Room? (indicate all that apply)

The ER staff was familiar with Adrenal Insufficiency

This ER had treated me or my loved one for prior Adrenal Crisis episodes

ER staff read and followed instructions I or a family member gave them

My primary physician/endocrinologist was contacted and gave instructions to the ER

An emergency plan had been put in place for me or my loved one

Treatment was given due to the insistence and/or threats I or my loved one made on my behalf

Treatment was given only after myself or my loved one was close to death (unconscious, irregular heart beat, low blood pressure)

NA...no treatment was given

Other (please specify)

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* 13. If you or your loved one was not treated by the Emergency Room for the Adrenal Crisis what was done to stop the crisis?

I/we self injected at the hospital or left and then self injected.

I/we had received a emergency injection prior to arrival and additional treatment was not necessary.

I/we took/gave extra doses of our oral medication. (hydrocortisone, prednisone, dex, prednilosone, etc)

I/we took/gave extra salt and/or electrolytes (drinking "Gatorade" type beverage, eating salty foods, etc.)

Nothing was done, it just stopped on its own.

Other (please specify)

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* 14. If you or your loved one has been at more than one hospital for crisis were your experiences at each hospital the same or different? (indicate all that apply)

Experiences were the same at each hospital.

Experiences were different depending on what hospital was visited.

My child received better care at a pediatric hospital.

Care was different between the small town vs big city hospitals.

Treatment was better at a hospital where I/we had shared information about Adrenal Crisis in advance anticipating that I/we may need to visit during a crisis.

When treatment was not given, I/We traveled to a different hospital and received treatment there.

Other (please specify or add details to your answers above)

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* 15. Did the adrenal crisis cause any short/long term affects from the crisis? (indicate how long the affects lasted)

No short or long term affects occurred

1-7 days

1 - 4 weeks

1 - 3 months

3 - 6 months

6 months - 1 year

1 year or more

I/we are not sure yet symptoms are still present, but improving. (please explain below)

Symptoms are improving.......

Please answer questions about disability based on disability caused by an Adrenal Crisis only. Do not answer based on a pre-existing disability even if you feel that Adrenal Insufficiency is the caused of it. This survey is just about outcomes from Emergency Room treatment.

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* 16. If you or your loved one suffered any short or long term effects from crisis please indicate the type here.

Not applicable, no short/long term effects occured

Death

Brain Damage

Coma

Stoke

Seizures

Paralysis

Long term disability

I or my loved one already had a disability and the adrenal crisis made it worse or added another problem.

If the affects of the crisis have worsened over time or if you or your loved one is receiving services not listed please indicate below.

Other (please specify)

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* 17. Were any additional doctor visits, including physical therapy or other specialty therapies that were REQUIRED DUE TO THE AFFECTS OF THE ADRENAL CRISIS?
(please indicate the types of treatment needed)

No additional care was necessary

Follow up care with my physician (in addition to regular check ups)

Physical Therapy

Occupational Therapy

Speech Therapy

Nursing home care

Rehabilitation Center

Counseling

Surgery

For children only (after the crisis my child qualified to receive special education)

Other (please specify)

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* 18. Has your family been impacted financially due to an Adrenal Crisis?

Unable to work or lost job (due to your own disability or the need to care for the loved one who had the crisis)

Have had to file for bankruptcy

I/We have bills we cannot pay and worry about our future

I/We have had to sell possessions in order to pay our medical bills

I/We had to move in with our extended family

I/We can no longer afford to live in our own home

If yes, please elaborate

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* 19. If the adrenal crisis caused short or long term disability for you or your loved one, were funds available to pay the extra costs involved?

No, I/We have had no help in covering the extra costs incurred due to the adrenal crisis

Health insurance held prior to the crisis has only covered a portion of our payments

Health insurance held prior to the crisis has covered all of our payments

Unemployment Insurance helps pay our bills

Medicaid helps pay our bills

My loved on or I receive SSI (disability payments)

Although permanent disability has occurred we have not been approved for SSI

I/We live in a County with universal health care and all our expenses have been covered.

I/we had a pre-existing disability for which financial assistance was already being given.

Other (please specify)

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* 1. On who's behalf, are you filling out this survey. (please fill out for one person only)

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* 2. How old is the subject of this survey? (the person you are answering the questions about)

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* 3. How many times has this person been to an Emergency Room during an impending or full blown adrenal crisis?

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* 4. How many times was the emergency glucocorticoid prescribed by your physician given prior to arrival at the ER? Solu-Cortef® Solu-Medrol® etc?

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* 5. From the time crisis symptoms began, how long was it until you or your loved one arrived at the Emergency Room?

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* 6. If you did not arrive at the Emergency Room within 30 minutes of the onset adrenal crisis symptoms, please tell us why? (check all that apply)

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* 7. How many times did you arrive at the Emergency Room via ambulance?

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* 8. Thinking of each time an Emergency Room visit was necessary.......How many times did ER Personal have knowledge of Adrenal Insufficiency and understand that immediate action was necessary?

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* 9. How long did it take for ER Personnel to administer treatment for you or your loved ones adrenal crisis?

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* 11. STOP please read carefully.....Only answer this question if you received treatment within 30 minutes! When treatment for the adrenal crisis WAS GIVEN within 30 minutes upon arrival at the Emergency Room how long did you or your loved one remain in the hospital?

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* 12. What were the factors that you believe helped in receiving treatment in the Emergency Room? (indicate all that apply)

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* 13. If you or your loved one was not treated by the Emergency Room for the Adrenal Crisis what was done to stop the crisis?

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* 14. If you or your loved one has been at more than one hospital for crisis were your experiences at each hospital the same or different? (indicate all that apply)

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* 15. Did the adrenal crisis cause any short/long term affects from the crisis? (indicate how long the affects lasted)

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* 16. If you or your loved one suffered any short or long term effects from crisis please indicate the type here.

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* 17. Were any additional doctor visits, including physical therapy or other specialty therapies that were REQUIRED DUE TO THE AFFECTS OF THE ADRENAL CRISIS?(please indicate the types of treatment needed)

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* 18. Has your family been impacted financially due to an Adrenal Crisis?

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* 19. If the adrenal crisis caused short or long term disability for you or your loved one, were funds available to pay the extra costs involved?

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* 20. Please put my name in the drawing for a free Adrenal Insufficiency Awareness Pin. We need your email or phone number.

* 4. How many times was the emergency glucocorticoid prescribed by your physician given prior to arrival at the ER?

Solu-Cortef® Solu-Medrol® etc?

* 17. Were any additional doctor visits, including physical therapy or other specialty therapies that were REQUIRED DUE TO THE AFFECTS OF THE ADRENAL CRISIS?
(please indicate the types of treatment needed)