Public Meeting for Patient-Focused Drug Development on Chronic Pain

This survey is OPEN and accepting submissions.

INSTRUCTIONS TO RESPONDENTS-

For the millions of American patients experiencing multiple, complex, chronic illnesses or living with chronic pain, opioids in various forms and strengths, when prescribed appropriately, can allow patients to manage their pain as well as significantly improve their quality of life when combined with a program of effective integrated health management.

In recent years, federal agencies (FDA, CDC, DEA and more) have become increasingly concerned about the abuse and misuse of opioid products, which have been described as an epidemic of major proportions in certain parts of the United States. We know that the failure to properly account for legal, therapeutic uses and consequences versus the consequences of illicit use has created an enormous backlash for patients who rely on these medications and who have used them safely and properly to good effect.

FDA is challenged with determining how to balance the need to ensure continued access to persons who rely on opioids for continuous pain relief while addressing the ongoing concerns about safe use, abuse and misuse. Determining where to place the focus on alternatives and new drug development is the focus of a meeting in Washington DC on July 9, 2018. Many of you will not be able to attend this so we are taking your voices to Washington DC with us. You can register to attend or view this hearing.

The registration link is located here :

https://www.eventbrite.com/e/public-meeting-for-patient-focused-drug-development-on-chronic-pain-registration-44555070415?utm-medium=discovery&utm-campaign=social&utm-content=attendeeshare&aff=esfb&utm-source=fb&utm-term=listing

FDA and CDC have publicly stated that they want to work with patient groups to determine the impact of this change. We believe that it is important for consumers with chronic and intractable pain (for any reason) to be represented in the policy changes. This collection tool is being distributed to consumer groups through social media platforms. Results will be summarized and shared with FDA and respondents for the July 9 2018 meeting and in the after meeting comments forwarded into the Federal Register by September 10, 2018. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies.

Do not try to take this survey with a smart phone unless you have installed survey monkey on your phone. This survey requires javascript to be enabled. To download javascript go to this link, download the free software, and install-

https://www.java.com/en/download/

We have captured the questions that FDA has invited a response to and we have added questions that will help you to clarify your personal experience. Please review them. Your best answer to these questions will help us to determine how consumers are most affected and where our advocacy efforts should be placed. Your personal identifying information will not be shared under ANY circumstances but your email and state/zip are necessary to confirm that (1) we can follow up with you if we have questions and (2) we can examine geographic location patterns as a factor in your response. Each submission will be assigned a code for reference in order to assure anonymity. During the data analysis process your personal name will be separated from the information and separately and securely store with a record number.

If you are a care partner to a friend or family member who cannot complete this on their own, please indicate that you have provided assistance on behalf of another.

The contact person for this survey is: Terri Lewis PhD tal7291@yahoo.com

Question Title

* 1. My role is (select your primary role)-

Person with chronic pain

Care partner to someone with chronic pain

Family member of a person with chronic pain

Helper (other friend, neighbor, health care provider)

Comments

Question Title

* 2. I am the family member, of a loved one who is now deceased since the inception of changes to his or her prescribing routine for pain management. (If this question does not apply, skip and go to 3.)

My loved one's cause of death was of undetermined origin

My Loved one took their life due to change to care routine, or withdrawal of medications, or withdrawal of medical management supports for pain (abandonment or forced taper)

My loved one died accidentally from prescribed medications (any prescription or over the counter) that were substituted for their normal and stable prescribing routine (step therapy or substitution of another class of medications).

Other reason (your explanation is voluntary - see comments)

Voluntary comments - please describe factors you believe are important to understand your answer.

Question Title

* 3. Do you or the person you are assisting have one or more medical conditions that require you to take medications (schedule II-controlled substances or schedule III-uncontrolled substances) or over the counter drugs? For each, list the symptoms that cause you the most concern.

YES

List the multiple co-occurring condition(s) for which you need medications and require pain management support (e.g. diabetes and peripheral neuropathy)

Question Title

* 4. Characterize your disease and pain symptoms in terms of the length of time that you have been dealing with it. Select the answer that best applies to you.

Less than 90 days (acute)

More than 90 days (chronic/intermittent)

More than 90 days (chronic/intractable and always present)

I was identified with one or more of these conditions from childhood (before the age of 18 years)

These conditions are not expected to cure and will need to be managed for the rest of my life (palliative care)

The diseases that generate my pain are progressive and will eventually require end-of-life (hospice care)

Identify the year you began to receive treatment for chronic or intractable pain associated with your health condition(s) or the point that it began to interrupt your activities of daily living.

Question Title

* 5. Do you or the person you are assisting currently have access to a team of physicians who are board certified and registered with DEA to prescribe all your medications including schedule II narcotics? Select all that apply.

	Not available to me	I need it but I don't have access (denied, lost, discharged)	Available to me when I need it
Primary care physician	Primary care physician Not available to me	Primary care physician I need it but I don't have access (denied, lost, discharged)	Primary care physician Available to me when I need it
Pain management physician	Pain management physician Not available to me	Pain management physician I need it but I don't have access (denied, lost, discharged)	Pain management physician Available to me when I need it
Rehabilitation medicine doctor or Physiatrist	Rehabilitation medicine doctor or Physiatrist Not available to me	Rehabilitation medicine doctor or Physiatrist I need it but I don't have access (denied, lost, discharged)	Rehabilitation medicine doctor or Physiatrist Available to me when I need it
Neurologist	Neurologist Not available to me	Neurologist I need it but I don't have access (denied, lost, discharged)	Neurologist Available to me when I need it
Psychiatrist, Psychologist, Licensed counselor	Psychiatrist, Psychologist, Licensed counselor Not available to me	Psychiatrist, Psychologist, Licensed counselor I need it but I don't have access (denied, lost, discharged)	Psychiatrist, Psychologist, Licensed counselor Available to me when I need it
Orthopedist	Orthopedist Not available to me	Orthopedist I need it but I don't have access (denied, lost, discharged)	Orthopedist Available to me when I need it
Rheumatologist	Rheumatologist Not available to me	Rheumatologist I need it but I don't have access (denied, lost, discharged)	Rheumatologist Available to me when I need it
Internal medicine specialist	Internal medicine specialist Not available to me	Internal medicine specialist I need it but I don't have access (denied, lost, discharged)	Internal medicine specialist Available to me when I need it
Endocrinologist	Endocrinologist Not available to me	Endocrinologist I need it but I don't have access (denied, lost, discharged)	Endocrinologist Available to me when I need it
Physical therapist or Occupational therapist	Physical therapist or Occupational therapist Not available to me	Physical therapist or Occupational therapist I need it but I don't have access (denied, lost, discharged)	Physical therapist or Occupational therapist Available to me when I need it
In home care giver support	In home care giver support Not available to me	In home care giver support I need it but I don't have access (denied, lost, discharged)	In home care giver support Available to me when I need it

In the last 24 months, have you been denied access to a physician, replaced a physician, or been discharged by physicians who have served as members of your treatment team (please specify the changes you have experienced)?
(Please check you state medical records law at this link.http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison) Do you have possession of copies of your health records (medical, insurance filings, lab tests, etc.?)

Question Title

* 6. If you or the person you are assisting have been discharged by a physician or clinic, please share alternative forms of pain management you are using or have considered using? Select all that apply.

Comments you would like to share

Question Title

* 7. Describe your pharmacy relationships

	Yes	No	See Comments
My insurance plan 'locks' me into the use of a specific or a single pharmacy for my medications.	My insurance plan 'locks' me into the use of a specific or a single pharmacy for my medications. Yes	My insurance plan 'locks' me into the use of a specific or a single pharmacy for my medications. No	My insurance plan 'locks' me into the use of a specific or a single pharmacy for my medications. See Comments
My pharmacy treats me like a valued customer.	My pharmacy treats me like a valued customer. Yes	My pharmacy treats me like a valued customer. No	My pharmacy treats me like a valued customer. See Comments
My pharmacy has your prescriptions in stock when you present your script?	My pharmacy has your prescriptions in stock when you present your script? Yes	My pharmacy has your prescriptions in stock when you present your script? No	My pharmacy has your prescriptions in stock when you present your script? See Comments
My pharmacy provides adequate counseling from my pharmacist when I fill my scripts	My pharmacy provides adequate counseling from my pharmacist when I fill my scripts Yes	My pharmacy provides adequate counseling from my pharmacist when I fill my scripts No	My pharmacy provides adequate counseling from my pharmacist when I fill my scripts See Comments
My pharmacist teaches me about common drug interactions (drug-drug; drug-food, drug-OTCs; drug-alcohol)	My pharmacist teaches me about common drug interactions (drug-drug; drug-food, drug-OTCs; drug-alcohol) Yes	My pharmacist teaches me about common drug interactions (drug-drug; drug-food, drug-OTCs; drug-alcohol) No	My pharmacist teaches me about common drug interactions (drug-drug; drug-food, drug-OTCs; drug-alcohol) See Comments
If my pharmacy is out of medications, they help ,e locate a pharmacy that can fill my prescription?	If my pharmacy is out of medications, they help ,e locate a pharmacy that can fill my prescription? Yes	If my pharmacy is out of medications, they help ,e locate a pharmacy that can fill my prescription? No	If my pharmacy is out of medications, they help ,e locate a pharmacy that can fill my prescription? See Comments
Is your pharmacy a preferred provider to your insurance plan?	Is your pharmacy a preferred provider to your insurance plan? Yes	Is your pharmacy a preferred provider to your insurance plan? No	Is your pharmacy a preferred provider to your insurance plan? See Comments
My pharmacist understands my medical needs and history.	My pharmacist understands my medical needs and history. Yes	My pharmacist understands my medical needs and history. No	My pharmacist understands my medical needs and history. See Comments
My pharmacy consistently fills my prescriptions.	My pharmacy consistently fills my prescriptions. Yes	My pharmacy consistently fills my prescriptions. No	My pharmacy consistently fills my prescriptions. See Comments
My pharmacy has a drug 'take back program' and allows me to return unused medications.	My pharmacy has a drug 'take back program' and allows me to return unused medications. Yes	My pharmacy has a drug 'take back program' and allows me to return unused medications. No	My pharmacy has a drug 'take back program' and allows me to return unused medications. See Comments
My pharmacy offers medications in packaging appropriate for my use.	My pharmacy offers medications in packaging appropriate for my use. Yes	My pharmacy offers medications in packaging appropriate for my use. No	My pharmacy offers medications in packaging appropriate for my use. See Comments

Identify the pharmacy(ies) that refuse to fill your prescriptions.

Question Title

* 8. What does your pharmacy require from you ? Select all that apply.

Medical records

Original prescription

You or a designee must present your prescription in person

A government issued identification

Proof of insurance coverage

Non-cash payment source for copays

Requirement to fill ALL PRESCRIPTIONS whether or not they are schedule II narcotics

My pharmacy meets all of my needs

My pharmacy does not meet all of my needs (see comments)

Describe your pharmacy experience.

Question Title

* 9. Have you or the person you are assisting changed your pharmacy one or more times in the last 24 months? Select all that apply.

I have not changed my pharmacy in the last 24 months

I changed my pharmacy because of changes in insurance plan coverage for my medications

I changed my pharmacy because they stopped stocking my medications

I have changed my pharmacy because they frequently claim to be out of stock

I have changed my pharmacy due to pharmacy filling errors (wrong drugs, shortages)

I have changed my pharmacy for other reasons

I have changed my pharmacy due to drug plan price changes from year to year

I am enrolled in a Part D (Medicare) plan

I am enrolled in a Medicaid covered plan

I am enrolled in a private insurance or employer sponsored health plan

I am enrolled in a VA sponsored pharmacy plan

Explain why you have changed your pharmacy(ies) in the last 24 months.

Question Title

* 10. Do you or the person you are assisting currently receive a prescription for any of these medications?

	YES	NO	Generic	Brand Name	Prior Approval Required	Dose or unit count limits	Refill requires personal visit to pharmacy	Insurance coverage	Cash purchase, no insurance
Oxycodone (any dose, form)	Oxycodone (any dose, form) YES	Oxycodone (any dose, form) NO	Oxycodone (any dose, form) Generic	Oxycodone (any dose, form) Brand Name	Oxycodone (any dose, form) Prior Approval Required	Oxycodone (any dose, form) Dose or unit count limits	Oxycodone (any dose, form) Refill requires personal visit to pharmacy	Oxycodone (any dose, form) Insurance coverage	Oxycodone (any dose, form) Cash purchase, no insurance
Hydrocodone (any dose, any form)	Hydrocodone (any dose, any form) YES	Hydrocodone (any dose, any form) NO	Hydrocodone (any dose, any form) Generic	Hydrocodone (any dose, any form) Brand Name	Hydrocodone (any dose, any form) Prior Approval Required	Hydrocodone (any dose, any form) Dose or unit count limits	Hydrocodone (any dose, any form) Refill requires personal visit to pharmacy	Hydrocodone (any dose, any form) Insurance coverage	Hydrocodone (any dose, any form) Cash purchase, no insurance
Morphine (any dose, form)	Morphine (any dose, form) YES	Morphine (any dose, form) NO	Morphine (any dose, form) Generic	Morphine (any dose, form) Brand Name	Morphine (any dose, form) Prior Approval Required	Morphine (any dose, form) Dose or unit count limits	Morphine (any dose, form) Refill requires personal visit to pharmacy	Morphine (any dose, form) Insurance coverage	Morphine (any dose, form) Cash purchase, no insurance
Oxymorphone	Oxymorphone YES	Oxymorphone NO	Oxymorphone Generic	Oxymorphone Brand Name	Oxymorphone Prior Approval Required	Oxymorphone Dose or unit count limits	Oxymorphone Refill requires personal visit to pharmacy	Oxymorphone Insurance coverage	Oxymorphone Cash purchase, no insurance
Any other form of opiate (dilaudid, Zohydro, other)	Any other form of opiate (dilaudid, Zohydro, other) YES	Any other form of opiate (dilaudid, Zohydro, other) NO	Any other form of opiate (dilaudid, Zohydro, other) Generic	Any other form of opiate (dilaudid, Zohydro, other) Brand Name	Any other form of opiate (dilaudid, Zohydro, other) Prior Approval Required	Any other form of opiate (dilaudid, Zohydro, other) Dose or unit count limits	Any other form of opiate (dilaudid, Zohydro, other) Refill requires personal visit to pharmacy	Any other form of opiate (dilaudid, Zohydro, other) Insurance coverage	Any other form of opiate (dilaudid, Zohydro, other) Cash purchase, no insurance
Methadone	Methadone YES	Methadone NO	Methadone Generic	Methadone Brand Name	Methadone Prior Approval Required	Methadone Dose or unit count limits	Methadone Refill requires personal visit to pharmacy	Methadone Insurance coverage	Methadone Cash purchase, no insurance
Transdermal fentanyl	Transdermal fentanyl YES	Transdermal fentanyl NO	Transdermal fentanyl Generic	Transdermal fentanyl Brand Name	Transdermal fentanyl Prior Approval Required	Transdermal fentanyl Dose or unit count limits	Transdermal fentanyl Refill requires personal visit to pharmacy	Transdermal fentanyl Insurance coverage	Transdermal fentanyl Cash purchase, no insurance
Transdermal or sublingual Buprenorphine or Suboxone (generic or other)	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) YES	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) NO	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Generic	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Brand Name	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Prior Approval Required	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Dose or unit count limits	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Refill requires personal visit to pharmacy	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Insurance coverage	Transdermal or sublingual Buprenorphine or Suboxone (generic or other) Cash purchase, no insurance
Ritalin or Adderall	Ritalin or Adderall YES	Ritalin or Adderall NO	Ritalin or Adderall Generic	Ritalin or Adderall Brand Name	Ritalin or Adderall Prior Approval Required	Ritalin or Adderall Dose or unit count limits	Ritalin or Adderall Refill requires personal visit to pharmacy	Ritalin or Adderall Insurance coverage	Ritalin or Adderall Cash purchase, no insurance
Urine toxicology screening required	Urine toxicology screening required YES	Urine toxicology screening required NO	Urine toxicology screening required Generic	Urine toxicology screening required Brand Name	Urine toxicology screening required Prior Approval Required	Urine toxicology screening required Dose or unit count limits	Urine toxicology screening required Refill requires personal visit to pharmacy	Urine toxicology screening required Insurance coverage	Urine toxicology screening required Cash purchase, no insurance

Comment

Question Title

* 11. Did you or the person you are assisting have to stop taking any of these medications due to lack of an available physician to prescribe, changes to pharmacy rules, or insurer prohibitions in coverage? Select all that applies.

	YES	NO	NO Physician to Prescribe	Pharmacy will not fill	Insurer will not cover	Cash purchases not accepted
Oxycodone (any dose, any form)	Oxycodone (any dose, any form) YES	Oxycodone (any dose, any form) NO	Oxycodone (any dose, any form) NO Physician to Prescribe	Oxycodone (any dose, any form) Pharmacy will not fill	Oxycodone (any dose, any form) Insurer will not cover	Oxycodone (any dose, any form) Cash purchases not accepted
Hydrocodone (any dose, any form)	Hydrocodone (any dose, any form) YES	Hydrocodone (any dose, any form) NO	Hydrocodone (any dose, any form) NO Physician to Prescribe	Hydrocodone (any dose, any form) Pharmacy will not fill	Hydrocodone (any dose, any form) Insurer will not cover	Hydrocodone (any dose, any form) Cash purchases not accepted
Morphine (any dose, any form)	Morphine (any dose, any form) YES	Morphine (any dose, any form) NO	Morphine (any dose, any form) NO Physician to Prescribe	Morphine (any dose, any form) Pharmacy will not fill	Morphine (any dose, any form) Insurer will not cover	Morphine (any dose, any form) Cash purchases not accepted
Oxymorphone	Oxymorphone YES	Oxymorphone NO	Oxymorphone NO Physician to Prescribe	Oxymorphone Pharmacy will not fill	Oxymorphone Insurer will not cover	Oxymorphone Cash purchases not accepted
Methadone	Methadone YES	Methadone NO	Methadone NO Physician to Prescribe	Methadone Pharmacy will not fill	Methadone Insurer will not cover	Methadone Cash purchases not accepted
Transdermal fentanyl	Transdermal fentanyl YES	Transdermal fentanyl NO	Transdermal fentanyl NO Physician to Prescribe	Transdermal fentanyl Pharmacy will not fill	Transdermal fentanyl Insurer will not cover	Transdermal fentanyl Cash purchases not accepted
Transdermal Buprenorphine or Suboxone (generic or branded)	Transdermal Buprenorphine or Suboxone (generic or branded) YES	Transdermal Buprenorphine or Suboxone (generic or branded) NO	Transdermal Buprenorphine or Suboxone (generic or branded) NO Physician to Prescribe	Transdermal Buprenorphine or Suboxone (generic or branded) Pharmacy will not fill	Transdermal Buprenorphine or Suboxone (generic or branded) Insurer will not cover	Transdermal Buprenorphine or Suboxone (generic or branded) Cash purchases not accepted
Ritalin or Adderall	Ritalin or Adderall YES	Ritalin or Adderall NO	Ritalin or Adderall NO Physician to Prescribe	Ritalin or Adderall Pharmacy will not fill	Ritalin or Adderall Insurer will not cover	Ritalin or Adderall Cash purchases not accepted
Urine screening required	Urine screening required YES	Urine screening required NO	Urine screening required NO Physician to Prescribe	Urine screening required Pharmacy will not fill	Urine screening required Insurer will not cover	Urine screening required Cash purchases not accepted

What is your state's policy on cash sales for Schedule II medications?

Question Title

* 12. Did a change of physician or prescriber result in a change of medications or substitutions of nonopiates, injections, pain pumps, or electrical stimulation devices?

	Gabapentin, Lyrica, Antidepressants or similar	Buprenorphine, Suboxone, Naloxone, or Methadone	Required as a condition of treatment	Various* (describe in comments)
Substitution with alternative medications	Substitution with alternative medications Gabapentin, Lyrica, Antidepressants or similar	Substitution with alternative medications Buprenorphine, Suboxone, Naloxone, or Methadone	Substitution with alternative medications Required as a condition of treatment	Substitution with alternative medications Various* (describe in comments)
Reduction of opiate doses to comply to a guideline or changes to state law	Reduction of opiate doses to comply to a guideline or changes to state law Gabapentin, Lyrica, Antidepressants or similar	Reduction of opiate doses to comply to a guideline or changes to state law Buprenorphine, Suboxone, Naloxone, or Methadone	Reduction of opiate doses to comply to a guideline or changes to state law Required as a condition of treatment	Reduction of opiate doses to comply to a guideline or changes to state law Various* (describe in comments)
Injections (Epidural steroid (ESI), trigger point, joint)	Injections (Epidural steroid (ESI), trigger point, joint) Gabapentin, Lyrica, Antidepressants or similar	Injections (Epidural steroid (ESI), trigger point, joint) Buprenorphine, Suboxone, Naloxone, or Methadone	Injections (Epidural steroid (ESI), trigger point, joint) Required as a condition of treatment	Injections (Epidural steroid (ESI), trigger point, joint) Various* (describe in comments)
Pain pump	Pain pump Gabapentin, Lyrica, Antidepressants or similar	Pain pump Buprenorphine, Suboxone, Naloxone, or Methadone	Pain pump Required as a condition of treatment	Pain pump Various* (describe in comments)
Electrical stimulation device (Spinal cord stimulator or TENS unit, other)	Electrical stimulation device (Spinal cord stimulator or TENS unit, other) Gabapentin, Lyrica, Antidepressants or similar	Electrical stimulation device (Spinal cord stimulator or TENS unit, other) Buprenorphine, Suboxone, Naloxone, or Methadone	Electrical stimulation device (Spinal cord stimulator or TENS unit, other) Required as a condition of treatment	Electrical stimulation device (Spinal cord stimulator or TENS unit, other) Various* (describe in comments)
Other adjunctive or complementary methods (e.g. pain education, biofeedback, CBT/mindfulness)	Other adjunctive or complementary methods (e.g. pain education, biofeedback, CBT/mindfulness) Gabapentin, Lyrica, Antidepressants or similar	Other adjunctive or complementary methods (e.g. pain education, biofeedback, CBT/mindfulness) Buprenorphine, Suboxone, Naloxone, or Methadone	Other adjunctive or complementary methods (e.g. pain education, biofeedback, CBT/mindfulness) Required as a condition of treatment	Other adjunctive or complementary methods (e.g. pain education, biofeedback, CBT/mindfulness) Various* (describe in comments)
Surgical recommendations	Surgical recommendations Gabapentin, Lyrica, Antidepressants or similar	Surgical recommendations Buprenorphine, Suboxone, Naloxone, or Methadone	Surgical recommendations Required as a condition of treatment	Surgical recommendations Various* (describe in comments)
Chiropractic or like therapy	Chiropractic or like therapy Gabapentin, Lyrica, Antidepressants or similar	Chiropractic or like therapy Buprenorphine, Suboxone, Naloxone, or Methadone	Chiropractic or like therapy Required as a condition of treatment	Chiropractic or like therapy Various* (describe in comments)

Please identify medications, equipment, or alternative protocols (please clarify)

Question Title

* 13. How I access my medications:

I walk into or use the drive in window at my pharmacy

My refills are processed at my clinic

I have my medications delivered through the mail to my home

My filling pharmacy delivers to my home

A family member or friend fills the prescription for me

I am home bound or disabled and cannot present my script to a pharmacy by myself

Other (please specify)

Question Title

* 14. Do you or the person you are assisting expect to continue to need these or similar medications as the direct result of your current medical diagnosis for the balance of your life? Select all that apply.

	YES	NO	Extended Release	Brand	Generic	Preapproval Required
Hydromorphone	Hydromorphone YES	Hydromorphone NO	Hydromorphone Extended Release	Hydromorphone Brand	Hydromorphone Generic	Hydromorphone Preapproval Required
Hydrocodone	Hydrocodone YES	Hydrocodone NO	Hydrocodone Extended Release	Hydrocodone Brand	Hydrocodone Generic	Hydrocodone Preapproval Required
Oxycodone	Oxycodone YES	Oxycodone NO	Oxycodone Extended Release	Oxycodone Brand	Oxycodone Generic	Oxycodone Preapproval Required
Morphine	Morphine YES	Morphine NO	Morphine Extended Release	Morphine Brand	Morphine Generic	Morphine Preapproval Required
Oxymorphone	Oxymorphone YES	Oxymorphone NO	Oxymorphone Extended Release	Oxymorphone Brand	Oxymorphone Generic	Oxymorphone Preapproval Required
Other form of opiate (Dilaudid, Zohydro, other)	Other form of opiate (Dilaudid, Zohydro, other) YES	Other form of opiate (Dilaudid, Zohydro, other) NO	Other form of opiate (Dilaudid, Zohydro, other) Extended Release	Other form of opiate (Dilaudid, Zohydro, other) Brand	Other form of opiate (Dilaudid, Zohydro, other) Generic	Other form of opiate (Dilaudid, Zohydro, other) Preapproval Required
Methadone	Methadone YES	Methadone NO	Methadone Extended Release	Methadone Brand	Methadone Generic	Methadone Preapproval Required
Transdermal fentanyl	Transdermal fentanyl YES	Transdermal fentanyl NO	Transdermal fentanyl Extended Release	Transdermal fentanyl Brand	Transdermal fentanyl Generic	Transdermal fentanyl Preapproval Required
Transdermal buprenorphine	Transdermal buprenorphine YES	Transdermal buprenorphine NO	Transdermal buprenorphine Extended Release	Transdermal buprenorphine Brand	Transdermal buprenorphine Generic	Transdermal buprenorphine Preapproval Required
Ritalin	Ritalin YES	Ritalin NO	Ritalin Extended Release	Ritalin Brand	Ritalin Generic	Ritalin Preapproval Required
Adderall	Adderall YES	Adderall NO	Adderall Extended Release	Adderall Brand	Adderall Generic	Adderall Preapproval Required

Comment

Question Title

* 15. Factors that I account for in choosing a course of treatment:

My treating provider is located within a reasonable distance from my residence.

My insurance plan covers my care needs.

My treatment is coordinated by a care team

My care providers understand my illness, disease, treatment needs

My care team values my choices, inputs and priorities

My care team coordinates with other community sectors (emergency room, pharmacy, home health, etc.)

My care team communicates with my care partners

My care team adjusts to differing conditions (frequency, severity, intermittent symptoms)

Other (please specify)

Question Title

* 16. Barriers that affect my care (briefly describe):

1. Describe the downsides to your current treatment and affect on your daily life.

2. Describe the challenges and barriers to accessing care for chronic pain in your community.

3. What would ideal treatment look like if it were available to you?

4. How well does your current regimen actually manage your pain symptoms?

Question Title

* 17. Is there something out there that would constitute an improvement to your treatment regimen? Please describe.

YES

Comment

Question Title

* 18. Are there activities or tools that could help you do that help you to manage your pain levels if they were available or affordable? Please share?

YES

Comment

Question Title

* 19. Estimate the amount of household income (out of pocket expense) consumed by pain management and support for health care (Select all that apply. Describe) ?

1-25% of our household income

26-50% of our household income

51-75% of our household income

More than 75% of our household income

I am eligible for prescription pharmacy and insurance payment assistance

I am NOT eligible for prescription pharmacy and insurance payment assistance

I cannot cover pain management expenses so I supplement with other methods

Comments

Question Title

* 20. Select all sources for your household income or the household income available to the person you are assisting.

I have no personal contribution to household income to report

Wages, earned income

VA Disability

Social Security Disability (SSDI)

Social Security Insurance (SSI)

Social Security Retirement (SSA)

Pension

Private Insurance Disability from employer

Savings

Trusts

Other (if other, add source to comments)

Other (please specify)

Question Title

* 21. Insurance Source. Select all sources and indicate whether you insurer covers your needs (schedule II narcotics, physician services, adjunctive care).

	Available to me	Not available to me	My plan has physicians, clinics, hospitals appropriate for my needs	My plan covers Schedule II drugs	My plan covers Schedule III drugs	My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
No insurance coverage to report	No insurance coverage to report Available to me	No insurance coverage to report Not available to me	No insurance coverage to report My plan has physicians, clinics, hospitals appropriate for my needs	No insurance coverage to report My plan covers Schedule II drugs	No insurance coverage to report My plan covers Schedule III drugs	No insurance coverage to report My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Private insurance (myself or family member)	Private insurance (myself or family member) Available to me	Private insurance (myself or family member) Not available to me	Private insurance (myself or family member) My plan has physicians, clinics, hospitals appropriate for my needs	Private insurance (myself or family member) My plan covers Schedule II drugs	Private insurance (myself or family member) My plan covers Schedule III drugs	Private insurance (myself or family member) My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Medicaid	Medicaid Available to me	Medicaid Not available to me	Medicaid My plan has physicians, clinics, hospitals appropriate for my needs	Medicaid My plan covers Schedule II drugs	Medicaid My plan covers Schedule III drugs	Medicaid My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Medicare Part A	Medicare Part A Available to me	Medicare Part A Not available to me	Medicare Part A My plan has physicians, clinics, hospitals appropriate for my needs	Medicare Part A My plan covers Schedule II drugs	Medicare Part A My plan covers Schedule III drugs	Medicare Part A My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Medicare Part B	Medicare Part B Available to me	Medicare Part B Not available to me	Medicare Part B My plan has physicians, clinics, hospitals appropriate for my needs	Medicare Part B My plan covers Schedule II drugs	Medicare Part B My plan covers Schedule III drugs	Medicare Part B My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Medicare Advantage (C [covers parts B&D)	Medicare Advantage (C [covers parts B&D) Available to me	Medicare Advantage (C [covers parts B&D) Not available to me	Medicare Advantage (C [covers parts B&D) My plan has physicians, clinics, hospitals appropriate for my needs	Medicare Advantage (C [covers parts B&D) My plan covers Schedule II drugs	Medicare Advantage (C [covers parts B&D) My plan covers Schedule III drugs	Medicare Advantage (C [covers parts B&D) My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Medicare Part D (Drug coverage)	Medicare Part D (Drug coverage) Available to me	Medicare Part D (Drug coverage) Not available to me	Medicare Part D (Drug coverage) My plan has physicians, clinics, hospitals appropriate for my needs	Medicare Part D (Drug coverage) My plan covers Schedule II drugs	Medicare Part D (Drug coverage) My plan covers Schedule III drugs	Medicare Part D (Drug coverage) My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Tricare	Tricare Available to me	Tricare Not available to me	Tricare My plan has physicians, clinics, hospitals appropriate for my needs	Tricare My plan covers Schedule II drugs	Tricare My plan covers Schedule III drugs	Tricare My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
VA sponsored health care (VAMC, CBOT, other)	VA sponsored health care (VAMC, CBOT, other) Available to me	VA sponsored health care (VAMC, CBOT, other) Not available to me	VA sponsored health care (VAMC, CBOT, other) My plan has physicians, clinics, hospitals appropriate for my needs	VA sponsored health care (VAMC, CBOT, other) My plan covers Schedule II drugs	VA sponsored health care (VAMC, CBOT, other) My plan covers Schedule III drugs	VA sponsored health care (VAMC, CBOT, other) My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
VA Dependent spouse coverage	VA Dependent spouse coverage Available to me	VA Dependent spouse coverage Not available to me	VA Dependent spouse coverage My plan has physicians, clinics, hospitals appropriate for my needs	VA Dependent spouse coverage My plan covers Schedule II drugs	VA Dependent spouse coverage My plan covers Schedule III drugs	VA Dependent spouse coverage My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Workman's Compensation	Workman's Compensation Available to me	Workman's Compensation Not available to me	Workman's Compensation My plan has physicians, clinics, hospitals appropriate for my needs	Workman's Compensation My plan covers Schedule II drugs	Workman's Compensation My plan covers Schedule III drugs	Workman's Compensation My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
My Insurer requires prior authorization for schedule II narcotics	My Insurer requires prior authorization for schedule II narcotics Available to me	My Insurer requires prior authorization for schedule II narcotics Not available to me	My Insurer requires prior authorization for schedule II narcotics My plan has physicians, clinics, hospitals appropriate for my needs	My Insurer requires prior authorization for schedule II narcotics My plan covers Schedule II drugs	My Insurer requires prior authorization for schedule II narcotics My plan covers Schedule III drugs	My Insurer requires prior authorization for schedule II narcotics My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
My insurer will not provide coverage for schedule II narcotics	My insurer will not provide coverage for schedule II narcotics Available to me	My insurer will not provide coverage for schedule II narcotics Not available to me	My insurer will not provide coverage for schedule II narcotics My plan has physicians, clinics, hospitals appropriate for my needs	My insurer will not provide coverage for schedule II narcotics My plan covers Schedule II drugs	My insurer will not provide coverage for schedule II narcotics My plan covers Schedule III drugs	My insurer will not provide coverage for schedule II narcotics My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
I have lost my coverage for these medications as a result of changes to my insurance plan	I have lost my coverage for these medications as a result of changes to my insurance plan Available to me	I have lost my coverage for these medications as a result of changes to my insurance plan Not available to me	I have lost my coverage for these medications as a result of changes to my insurance plan My plan has physicians, clinics, hospitals appropriate for my needs	I have lost my coverage for these medications as a result of changes to my insurance plan My plan covers Schedule II drugs	I have lost my coverage for these medications as a result of changes to my insurance plan My plan covers Schedule III drugs	I have lost my coverage for these medications as a result of changes to my insurance plan My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)
Changes to policies or physicians have not been affected my current coverage	Changes to policies or physicians have not been affected my current coverage Available to me	Changes to policies or physicians have not been affected my current coverage Not available to me	Changes to policies or physicians have not been affected my current coverage My plan has physicians, clinics, hospitals appropriate for my needs	Changes to policies or physicians have not been affected my current coverage My plan covers Schedule II drugs	Changes to policies or physicians have not been affected my current coverage My plan covers Schedule III drugs	Changes to policies or physicians have not been affected my current coverage My plan covers adjunctive services (home care, OT/PT, chronic care, hospice, alternative methods)

Other comments (please specify)

Question Title

* 22. In the last 24 months, my support for pain management has -

Improved, gotten better

Stayed about the same with few interruptions

Gotten worse, with changes or disruptions to my care

I do not currently have support for pain management

What has made your care better, the same, or worse (please specify)?

Question Title

* 23. Rate your satisfaction with the following supports

	Not available	Not satisfied	Satisfied	Very satisfied	Comments
Primary care	Primary care Not available	Primary care Not satisfied	Primary care Satisfied	Primary care Very satisfied	Primary care Comments
Pain management	Pain management Not available	Pain management Not satisfied	Pain management Satisfied	Pain management Very satisfied	Pain management Comments
Specialty medical care (neurology, orthopedic, rheumatology, etc.)	Specialty medical care (neurology, orthopedic, rheumatology, etc.) Not available	Specialty medical care (neurology, orthopedic, rheumatology, etc.) Not satisfied	Specialty medical care (neurology, orthopedic, rheumatology, etc.) Satisfied	Specialty medical care (neurology, orthopedic, rheumatology, etc.) Very satisfied	Specialty medical care (neurology, orthopedic, rheumatology, etc.) Comments
Integrated pain supports (counseling, psychiatriatry, mental health)	Integrated pain supports (counseling, psychiatriatry, mental health) Not available	Integrated pain supports (counseling, psychiatriatry, mental health) Not satisfied	Integrated pain supports (counseling, psychiatriatry, mental health) Satisfied	Integrated pain supports (counseling, psychiatriatry, mental health) Very satisfied	Integrated pain supports (counseling, psychiatriatry, mental health) Comments
Pharmacy services	Pharmacy services Not available	Pharmacy services Not satisfied	Pharmacy services Satisfied	Pharmacy services Very satisfied	Pharmacy services Comments
Education about my health management	Education about my health management Not available	Education about my health management Not satisfied	Education about my health management Satisfied	Education about my health management Very satisfied	Education about my health management Comments
Addiction services	Addiction services Not available	Addiction services Not satisfied	Addiction services Satisfied	Addiction services Very satisfied	Addiction services Comments
Palliative or chronic care	Palliative or chronic care Not available	Palliative or chronic care Not satisfied	Palliative or chronic care Satisfied	Palliative or chronic care Very satisfied	Palliative or chronic care Comments
Insurance plan	Insurance plan Not available	Insurance plan Not satisfied	Insurance plan Satisfied	Insurance plan Very satisfied	Insurance plan Comments
Assistive technology or equipment providers	Assistive technology or equipment providers Not available	Assistive technology or equipment providers Not satisfied	Assistive technology or equipment providers Satisfied	Assistive technology or equipment providers Very satisfied	Assistive technology or equipment providers Comments
Hospital, skilled nursing, or emergency room services	Hospital, skilled nursing, or emergency room services Not available	Hospital, skilled nursing, or emergency room services Not satisfied	Hospital, skilled nursing, or emergency room services Satisfied	Hospital, skilled nursing, or emergency room services Very satisfied	Hospital, skilled nursing, or emergency room services Comments
Communication between members of my health care team	Communication between members of my health care team Not available	Communication between members of my health care team Not satisfied	Communication between members of my health care team Satisfied	Communication between members of my health care team Very satisfied	Communication between members of my health care team Comments

Comments (please specify)

Question Title

* 24. Demographics (REQUIRED)

Name (First & Last INITIALS ONLY e.g T.L.):

City/Town:

State: *

ZIP: *

Country:

Valid email Address: *

Question Title

* 25. Which category below includes your age?

17 or younger (Parent disclosure on behalf of child)

18-20

21-29

30-39

40-49

50-59

60 or older

Question Title

* 26. What is the sex or gender orientation you declare?

Female

Male

Other gender orientation (LGBTQ)

Do not choose to declare

Do you believe that sex or gender is a factor in the quality of your care?

Question Title

* 27. Racial or ethnic group with which you identify for census purposes

Caucasian

African American

Hispanic or Latina

Asian Pacific Islander

Asian subgroup

Native American

Question Title

* 28. Highest level of education (Select one).

High school or GED

Some college

Community College or Trade School Training

4 year College degree

Master's degree or work toward Master's degree

Doctoral degree or equivalent work towards degree (includes PhD, JD, MD, or combination)

Other

Do you manage your health care independently, or do you rely on a friend or advocate to assist you with your medical interactions? If you rely on a friend or advocate, do your health care providers accept their presence, assistance, or advocacy?

Thank you for taking the time to complete this survey. We will send results to you through the email address you have provided.

Question Title

* 29. By selecting YES at this step, I agree to share my information with the survey manager with the understanding that results will be used to represent my information to FDA for their July 9 2018 meeting, and that I may withdraw my authorization at any time by contacting the survey manager. My NAME and personally identifiable information will never be publicly released but my choices will be analyzed for the purpose of understanding the status of persons who currently need support for chronic pain in any form. My authorization expires 12 months from the date I complete this survey and submit my results.

YES

Question Title

* 30. I would like to be contacted to participate in research opportunities regarding my personal experiences regarding the management of pain and/or interaction with pain management services, supports.

Yes

	No	Yes	See my comments
I have been discharged from primary care because of my need for pain support and I am concerned about my level of functioning or independence.	I have been discharged from primary care because of my need for pain support and I am concerned about my level of functioning or independence. No	I have been discharged from primary care because of my need for pain support and I am concerned about my level of functioning or independence. Yes	I have been discharged from primary care because of my need for pain support and I am concerned about my level of functioning or independence. See my comments
I have been discharged from pain management care and I am concerned about the current levels of care on my functioning and independence.	I have been discharged from pain management care and I am concerned about the current levels of care on my functioning and independence. No	I have been discharged from pain management care and I am concerned about the current levels of care on my functioning and independence. Yes	I have been discharged from pain management care and I am concerned about the current levels of care on my functioning and independence. See my comments
I am using over the counter medications (OTCs) to help reduce pain.	I am using over the counter medications (OTCs) to help reduce pain. No	I am using over the counter medications (OTCs) to help reduce pain. Yes	I am using over the counter medications (OTCs) to help reduce pain. See my comments
The reduction in pain care has increased my use of alcohol or tobacco to control pain levels.	The reduction in pain care has increased my use of alcohol or tobacco to control pain levels. No	The reduction in pain care has increased my use of alcohol or tobacco to control pain levels. Yes	The reduction in pain care has increased my use of alcohol or tobacco to control pain levels. See my comments
The loss of pain care has resulted in feelings of hoplessness and/or increased my consideration of suicide.	The loss of pain care has resulted in feelings of hoplessness and/or increased my consideration of suicide. No	The loss of pain care has resulted in feelings of hoplessness and/or increased my consideration of suicide. Yes	The loss of pain care has resulted in feelings of hoplessness and/or increased my consideration of suicide. See my comments
I have borrowed or considered borrowing medications from friends or family to address my pain levels.	I have borrowed or considered borrowing medications from friends or family to address my pain levels. No	I have borrowed or considered borrowing medications from friends or family to address my pain levels. Yes	I have borrowed or considered borrowing medications from friends or family to address my pain levels. See my comments
I have used or are considered the use of street drugs to address my untreated pain levels.	I have used or are considered the use of street drugs to address my untreated pain levels. No	I have used or are considered the use of street drugs to address my untreated pain levels. Yes	I have used or are considered the use of street drugs to address my untreated pain levels. See my comments
The discharge from pain care resulted in a decline in my health status.	The discharge from pain care resulted in a decline in my health status. No	The discharge from pain care resulted in a decline in my health status. Yes	The discharge from pain care resulted in a decline in my health status. See my comments
The discharge from pain care has added extra stress or burden to my daily life	The discharge from pain care has added extra stress or burden to my daily life No	The discharge from pain care has added extra stress or burden to my daily life Yes	The discharge from pain care has added extra stress or burden to my daily life See my comments
My family life is negatively affected by my loss of access to pain care.	My family life is negatively affected by my loss of access to pain care. No	My family life is negatively affected by my loss of access to pain care. Yes	My family life is negatively affected by my loss of access to pain care. See my comments
I have refused some services that I felt were not appropriate for my needs (comments)	I have refused some services that I felt were not appropriate for my needs (comments) No	I have refused some services that I felt were not appropriate for my needs (comments) Yes	I have refused some services that I felt were not appropriate for my needs (comments) See my comments
I have been told that I must accept services I do not want in order to get services that I need	I have been told that I must accept services I do not want in order to get services that I need No	I have been told that I must accept services I do not want in order to get services that I need Yes	I have been told that I must accept services I do not want in order to get services that I need See my comments
My refusal of unwanted services resulted in my discharge from primary care, pain management, or other services.	My refusal of unwanted services resulted in my discharge from primary care, pain management, or other services. No	My refusal of unwanted services resulted in my discharge from primary care, pain management, or other services. Yes	My refusal of unwanted services resulted in my discharge from primary care, pain management, or other services. See my comments
Discharge from primary or pain care has resulted in long lapses in the care of my disease(s) and/or pain support	Discharge from primary or pain care has resulted in long lapses in the care of my disease(s) and/or pain support No	Discharge from primary or pain care has resulted in long lapses in the care of my disease(s) and/or pain support Yes	Discharge from primary or pain care has resulted in long lapses in the care of my disease(s) and/or pain support See my comments