Chronic Condition Survey

Recurring Medical Paperwork and Certification Burden Survey

This survey asks about recurring paperwork, certification, recertification, prior authorization, and medical-necessity documentation related to lifelong or irreversible medical conditions. Respondents may participate from more than one perspective, and relevant questions are shown for each selected role.

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Consent to participate *

I agree to participate in this voluntary survey.

This survey asks about recurring paperwork, certification, recertification, prior authorization, and medical-necessity documentation related to lifelong or irreversible medical conditions. You may skip optional questions. Please do not include medical record numbers, insurance IDs, full medical records, or information you do not want included in the project dataset.

Which best describes your perspective? *

I am a clinician or healthcare provider
I am a parent, family member, or caregiver
I am a person living with a lifelong or irreversible medical condition
I work for an advocacy organization or nonprofit
I work in clinic administration, billing, prior authorization, or care coordination
I work for an insurer, benefits administrator, employer benefits office, or payer
I work for a pharmaceutical, medical device, diagnostics, or treatment-related company
I work in public policy, government, journalism, or research
Other

Please check all that apply. You may select more than one role.

If other, please briefly describe your perspective

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What type of lifelong or irreversible conditions do you deal with?

ALS
Cystic Fibrosis
Down Syndrome
Type 1 Diabetes
Multiple Sclerosis
Parkinson’s Disease
Permanent physical disability
Spinal cord injury
Rare genetic disorder
Other lifelong or irreversible condition
Prefer not to say

Check all that apply

If other condition(s), please describe briefly

What services, medications, devices, or supports are affected by recurring paperwork?

Diabetes supplies, CGM, pump supplies, or insulin-related supplies
Disability accommodations or benefits
Home health or personal care services
Insurance coverage approvals
Medical devices or durable medical equipment
Prescription medications
Prior authorizations
Specialist visits
Therapy, rehabilitation, or habilitation services
Other
Not sure

Check all that apply

If other services, devices, or supports are affected, please describe briefly

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Patient & Caregiver Experience

Questions about time, cost, access interruptions, and personal burden.

In the past 12 months, how many separate paperwork or recertification episodes have been involved?

0
1
2–3
4–6
7–12
More than 12
Not sure

For a typical episode, about how much total time is spent by the affected person or caregiver?

Less than 15 minutes
15–30 minutes
31–60 minutes
1–2 hours
3–5 hours
More than 5 hours
Not sure

In the past 12 months, how many hours of work were missed because of paperwork, phone calls, appointments, denials, appeals, or delays?

0
Less than 1 hour
1–3 hours
4–8 hours
9–16 hours
17–40 hours
More than 40 hours
Not sure / not applicable

How was missed work usually handled?

Paid time off
Unpaid time
Flexible work hours
Self-employment time lost
Reduced productivity while working
Other

Overall, how burdensome is recurring paperwork or certification?

0 = not burdensome at all 10 = extremely burdensome
0	1	2	3	4	5	6	7	8	9	10

About how much did this paperwork burden cost directly in the past 12 months?

$0
$1–$50
$51–$100
$101–$250
$251–$500
$501–$1,000
More than $1,000
Not sure

Include cash purchases while waiting, extra appointments, transportation, parking, childcare, document fees, postage, or similar costs.

How often has recurring documentation caused a delay or interruption in care, medication, supplies, services, or benefits?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Medication	NeverMedication Never	Once a yearMedication Once a year	Once a quarterMedication Once a quarter	Once a monthMedication Once a month	Multiple times per monthMedication Multiple times per month
Medical device or equipment	NeverMedical device or equipment Never	Once a yearMedical device or equipment Once a year	Once a quarterMedical device or equipment Once a quarter	Once a monthMedical device or equipment Once a month	Multiple times per monthMedical device or equipment Multiple times per month
Supplies	NeverSupplies Never	Once a yearSupplies Once a year	Once a quarterSupplies Once a quarter	Once a monthSupplies Once a month	Multiple times per monthSupplies Multiple times per month
Specialist care	NeverSpecialist care Never	Once a yearSpecialist care Once a year	Once a quarterSpecialist care Once a quarter	Once a monthSpecialist care Once a month	Multiple times per monthSpecialist care Multiple times per month
Therapy or rehabilitation	NeverTherapy or rehabilitation Never	Once a yearTherapy or rehabilitation Once a year	Once a quarterTherapy or rehabilitation Once a quarter	Once a monthTherapy or rehabilitation Once a month	Multiple times per monthTherapy or rehabilitation Multiple times per month
Home services	NeverHome services Never	Once a yearHome services Once a year	Once a quarterHome services Once a quarter	Once a monthHome services Once a month	Multiple times per monthHome services Multiple times per month
Disability benefits or accommodations	NeverDisability benefits or accommodations Never	Once a yearDisability benefits or accommodations Once a year	Once a quarterDisability benefits or accommodations Once a quarter	Once a monthDisability benefits or accommodations Once a month	Multiple times per monthDisability benefits or accommodations Multiple times per month
Insurance coverage	NeverInsurance coverage Never	Once a yearInsurance coverage Once a year	Once a quarterInsurance coverage Once a quarter	Once a monthInsurance coverage Once a month	Multiple times per monthInsurance coverage Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

How often have recurring paperwork requirements contributed to the following impacts?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Stress or anxiety	NeverStress or anxiety Never	Once a yearStress or anxiety Once a year	Once a quarterStress or anxiety Once a quarter	Once a monthStress or anxiety Once a month	Multiple times per monthStress or anxiety Multiple times per month
Missed work or school	NeverMissed work or school Never	Once a yearMissed work or school Once a year	Once a quarterMissed work or school Once a quarter	Once a monthMissed work or school Once a month	Multiple times per monthMissed work or school Multiple times per month
Extra phone calls or messages	NeverExtra phone calls or messages Never	Once a yearExtra phone calls or messages Once a year	Once a quarterExtra phone calls or messages Once a quarter	Once a monthExtra phone calls or messages Once a month	Multiple times per monthExtra phone calls or messages Multiple times per month
Delayed care	NeverDelayed care Never	Once a yearDelayed care Once a year	Once a quarterDelayed care Once a quarter	Once a monthDelayed care Once a month	Multiple times per monthDelayed care Multiple times per month
Increased out-of-pocket costs	NeverIncreased out-of-pocket costs Never	Once a yearIncreased out-of-pocket costs Once a year	Once a quarterIncreased out-of-pocket costs Once a quarter	Once a monthIncreased out-of-pocket costs Once a month	Multiple times per monthIncreased out-of-pocket costs Multiple times per month
Appeal or denial process	NeverAppeal or denial process Never	Once a yearAppeal or denial process Once a year	Once a quarterAppeal or denial process Once a quarter	Once a monthAppeal or denial process Once a month	Multiple times per monthAppeal or denial process Multiple times per month
Medical risk or worsening symptoms	NeverMedical risk or worsening symptoms Never	Once a yearMedical risk or worsening symptoms Once a year	Once a quarterMedical risk or worsening symptoms Once a quarter	Once a monthMedical risk or worsening symptoms Once a month	Multiple times per monthMedical risk or worsening symptoms Multiple times per month
Time taken away from caregiving, family, or work	NeverTime taken away from caregiving, family, or work Never	Once a yearTime taken away from caregiving, family, or work Once a year	Once a quarterTime taken away from caregiving, family, or work Once a quarter	Once a monthTime taken away from caregiving, family, or work Once a month	Multiple times per monthTime taken away from caregiving, family, or work Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

Provider & Clinic Experience

Questions about administrative workload, staff time, organizational burden, and observed patient effects.

In your role, how often do you handle recurring certification, recertification, prior authorization, or medical-necessity paperwork for patients with lifelong or irreversible conditions?

Not sure
Daily
Several times per week
Weekly
Monthly
Quarterly
Annually

Approximately how many such requests does your clinic, team, or role handle per month?

Not sure
0
1–5
6–20
21–50
51–100
More than 100

How much time do each of these roles spend on recurring paperwork requests?

	Not sure	Less than 10 minutes	10-30 minutes	31-60 minutes	1-2 hours	2-4 hours	More than 4 hours	Varies widely
Physician / advanced practice clinician	Not surePhysician / advanced practice clinician Not sure	Less than 10 minutesPhysician / advanced practice clinician Less than 10 minutes	10-30 minutesPhysician / advanced practice clinician 10-30 minutes	31-60 minutesPhysician / advanced practice clinician 31-60 minutes	1-2 hoursPhysician / advanced practice clinician 1-2 hours	2-4 hoursPhysician / advanced practice clinician 2-4 hours	More than 4 hoursPhysician / advanced practice clinician More than 4 hours	Varies widelyPhysician / advanced practice clinician Varies widely
Nurse	Not sureNurse Not sure	Less than 10 minutesNurse Less than 10 minutes	10-30 minutesNurse 10-30 minutes	31-60 minutesNurse 31-60 minutes	1-2 hoursNurse 1-2 hours	2-4 hoursNurse 2-4 hours	More than 4 hoursNurse More than 4 hours	Varies widelyNurse Varies widely
Medical assistant	Not sureMedical assistant Not sure	Less than 10 minutesMedical assistant Less than 10 minutes	10-30 minutesMedical assistant 10-30 minutes	31-60 minutesMedical assistant 31-60 minutes	1-2 hoursMedical assistant 1-2 hours	2-4 hoursMedical assistant 2-4 hours	More than 4 hoursMedical assistant More than 4 hours	Varies widelyMedical assistant Varies widely
Prior authorization specialist	Not surePrior authorization specialist Not sure	Less than 10 minutesPrior authorization specialist Less than 10 minutes	10-30 minutesPrior authorization specialist 10-30 minutes	31-60 minutesPrior authorization specialist 31-60 minutes	1-2 hoursPrior authorization specialist 1-2 hours	2-4 hoursPrior authorization specialist 2-4 hours	More than 4 hoursPrior authorization specialist More than 4 hours	Varies widelyPrior authorization specialist Varies widely
Billing staff	Not sureBilling staff Not sure	Less than 10 minutesBilling staff Less than 10 minutes	10-30 minutesBilling staff 10-30 minutes	31-60 minutesBilling staff 31-60 minutes	1-2 hoursBilling staff 1-2 hours	2-4 hoursBilling staff 2-4 hours	More than 4 hoursBilling staff More than 4 hours	Varies widelyBilling staff Varies widely
Front desk / administrative staff	Not sureFront desk / administrative staff Not sure	Less than 10 minutesFront desk / administrative staff Less than 10 minutes	10-30 minutesFront desk / administrative staff 10-30 minutes	31-60 minutesFront desk / administrative staff 31-60 minutes	1-2 hoursFront desk / administrative staff 1-2 hours	2-4 hoursFront desk / administrative staff 2-4 hours	More than 4 hoursFront desk / administrative staff More than 4 hours	Varies widelyFront desk / administrative staff Varies widely
Care coordinator / social worker	Not sureCare coordinator / social worker Not sure	Less than 10 minutesCare coordinator / social worker Less than 10 minutes	10-30 minutesCare coordinator / social worker 10-30 minutes	31-60 minutesCare coordinator / social worker 31-60 minutes	1-2 hoursCare coordinator / social worker 1-2 hours	2-4 hoursCare coordinator / social worker 2-4 hours	More than 4 hoursCare coordinator / social worker More than 4 hours	Varies widelyCare coordinator / social worker Varies widely
Other	Not sureOther Not sure	Less than 10 minutesOther Less than 10 minutes	10-30 minutesOther 10-30 minutes	31-60 minutesOther 31-60 minutes	1-2 hoursOther 1-2 hours	2-4 hoursOther 2-4 hours	More than 4 hoursOther More than 4 hours	Varies widelyOther Varies widely

If you can share a non-confidential estimate, what is the approximate annual cost to your practice, team, or organization?

Not sure / prefer not to say
Less than $1,000
$1,000–$4,999
$5,000–$24,999
$25,000–$99,999
$100,000+

Please do not submit confidential business information. Ranges are preferred.

What has been the burden of these recurring paperwork requests?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Extra phone calls or messages	NeverExtra phone calls or messages Never	Once a yearExtra phone calls or messages Once a year	Once a quarterExtra phone calls or messages Once a quarter	Once a monthExtra phone calls or messages Once a month	Multiple times per monthExtra phone calls or messages Multiple times per month
Repeated insurance disputes	NeverRepeated insurance disputes Never	Once a yearRepeated insurance disputes Once a year	Once a quarterRepeated insurance disputes Once a quarter	Once a monthRepeated insurance disputes Once a month	Multiple times per monthRepeated insurance disputes Multiple times per month
Unbillable hours	NeverUnbillable hours Never	Once a yearUnbillable hours Once a year	Once a quarterUnbillable hours Once a quarter	Once a monthUnbillable hours Once a month	Multiple times per monthUnbillable hours Multiple times per month
Increased stress or anxiety	NeverIncreased stress or anxiety Never	Once a yearIncreased stress or anxiety Once a year	Once a quarterIncreased stress or anxiety Once a quarter	Once a monthIncreased stress or anxiety Once a month	Multiple times per monthIncreased stress or anxiety Multiple times per month
Time taken away from personal life	NeverTime taken away from personal life Never	Once a yearTime taken away from personal life Once a year	Once a quarterTime taken away from personal life Once a quarter	Once a monthTime taken away from personal life Once a month	Multiple times per monthTime taken away from personal life Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

What has been the burden of these interruptions or delays for your patients?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Stress or anxiety	NeverStress or anxiety Never	Once a yearStress or anxiety Once a year	Once a quarterStress or anxiety Once a quarter	Once a monthStress or anxiety Once a month	Multiple times per monthStress or anxiety Multiple times per month
Missed work or school	NeverMissed work or school Never	Once a yearMissed work or school Once a year	Once a quarterMissed work or school Once a quarter	Once a monthMissed work or school Once a month	Multiple times per monthMissed work or school Multiple times per month
Extra phone calls or messages	NeverExtra phone calls or messages Never	Once a yearExtra phone calls or messages Once a year	Once a quarterExtra phone calls or messages Once a quarter	Once a monthExtra phone calls or messages Once a month	Multiple times per monthExtra phone calls or messages Multiple times per month
Delayed care	NeverDelayed care Never	Once a yearDelayed care Once a year	Once a quarterDelayed care Once a quarter	Once a monthDelayed care Once a month	Multiple times per monthDelayed care Multiple times per month
Increased out-of-pocket costs	NeverIncreased out-of-pocket costs Never	Once a yearIncreased out-of-pocket costs Once a year	Once a quarterIncreased out-of-pocket costs Once a quarter	Once a monthIncreased out-of-pocket costs Once a month	Multiple times per monthIncreased out-of-pocket costs Multiple times per month
Medical risk or worsening symptoms	NeverMedical risk or worsening symptoms Never	Once a yearMedical risk or worsening symptoms Once a year	Once a quarterMedical risk or worsening symptoms Once a quarter	Once a monthMedical risk or worsening symptoms Once a month	Multiple times per monthMedical risk or worsening symptoms Multiple times per month
Time taken away from caregiving, family, or work	NeverTime taken away from caregiving, family, or work Never	Once a yearTime taken away from caregiving, family, or work Once a year	Once a quarterTime taken away from caregiving, family, or work Once a quarter	Once a monthTime taken away from caregiving, family, or work Once a month	Multiple times per monthTime taken away from caregiving, family, or work Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

Treatment Access Experience

Questions about recurring paperwork affecting access support, operations, customers, and treatment continuity.

Which best describes your organization?

Pharmaceutical manufacturer
Medical device manufacturer
Diagnostics or laboratory company
Durable medical equipment or medical-supply company
Specialty pharmacy, infusion, or treatment-services organization
Health technology or patient-support company
Other

Check all that apply.

How often do recurring certification, recertification, or prior-authorization requirements generate access or support cases for your organization?

Annually
Quarterly
Monthly
Weekly
Several times per week
Daily
Not sure

Approximately how many affected cases or customers does your team encounter per month?

0
1-5
6-20
21-50
51-100
More than 100
Not sure

Approximately how much staff time is spent on a typical affected case?

Less than 10 minutes
10-30 minutes
31-60 minutes
1-2 hours
2-4 hours
More than 4 hours
Varies widely
Not sure

Which functions are commonly involved?

Market access / reimbursement
Patient or customer support
Field reimbursement / access support
Sales / account teams
Medical affairs
Legal / compliance
Operations / supply
Other

Check all that apply.

If you can share a non-confidential estimate, what is the approximate annual organizational cost associated with this recurring work?

Less than $1,000
$1,000-$4,999
$5,000-$24,999
$25,000-$99,999
$100,000-$499,999
$500,000+
Not sure / prefer not to say

Please do not submit confidential business information. Ranges are preferred.

How often do recurring paperwork requirements contribute to the following customer or patient consequences?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Delayed treatment initiation	NeverDelayed treatment initiation Never	Once a yearDelayed treatment initiation Once a year	Once a quarterDelayed treatment initiation Once a quarter	Once a monthDelayed treatment initiation Once a month	Multiple times per monthDelayed treatment initiation Multiple times per month
Delayed refill or reorder	NeverDelayed refill or reorder Never	Once a yearDelayed refill or reorder Once a year	Once a quarterDelayed refill or reorder Once a quarter	Once a monthDelayed refill or reorder Once a month	Multiple times per monthDelayed refill or reorder Multiple times per month
Interruption or abandonment of therapy	NeverInterruption or abandonment of therapy Never	Once a yearInterruption or abandonment of therapy Once a year	Once a quarterInterruption or abandonment of therapy Once a quarter	Once a monthInterruption or abandonment of therapy Once a month	Multiple times per monthInterruption or abandonment of therapy Multiple times per month
Patient or customer escalation	NeverPatient or customer escalation Never	Once a yearPatient or customer escalation Once a year	Once a quarterPatient or customer escalation Once a quarter	Once a monthPatient or customer escalation Once a month	Multiple times per monthPatient or customer escalation Multiple times per month
Bridge, free, or replacement product	NeverBridge, free, or replacement product Never	Once a yearBridge, free, or replacement product Once a year	Once a quarterBridge, free, or replacement product Once a quarter	Once a monthBridge, free, or replacement product Once a month	Multiple times per monthBridge, free, or replacement product Multiple times per month
Additional provider-office support	NeverAdditional provider-office support Never	Once a yearAdditional provider-office support Once a year	Once a quarterAdditional provider-office support Once a quarter	Once a monthAdditional provider-office support Once a month	Multiple times per monthAdditional provider-office support Multiple times per month
Medical risk or worsening symptoms	NeverMedical risk or worsening symptoms Never	Once a yearMedical risk or worsening symptoms Once a year	Once a quarterMedical risk or worsening symptoms Once a quarter	Once a monthMedical risk or worsening symptoms Once a month	Multiple times per monthMedical risk or worsening symptoms Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

How often do recurring paperwork requirements create the following organizational burdens?

	Never	Once a year	Once a quarter	Once a month	Multiple times per month
Additional support staff time	NeverAdditional support staff time Never	Once a yearAdditional support staff time Once a year	Once a quarterAdditional support staff time Once a quarter	Once a monthAdditional support staff time Once a month	Multiple times per monthAdditional support staff time Multiple times per month
Unreimbursed support expense	NeverUnreimbursed support expense Never	Once a yearUnreimbursed support expense Once a year	Once a quarterUnreimbursed support expense Once a quarter	Once a monthUnreimbursed support expense Once a month	Multiple times per monthUnreimbursed support expense Multiple times per month
Repeated payer or provider follow-up	NeverRepeated payer or provider follow-up Never	Once a yearRepeated payer or provider follow-up Once a year	Once a quarterRepeated payer or provider follow-up Once a quarter	Once a monthRepeated payer or provider follow-up Once a month	Multiple times per monthRepeated payer or provider follow-up Multiple times per month
Delayed or lost revenue	NeverDelayed or lost revenue Never	Once a yearDelayed or lost revenue Once a year	Once a quarterDelayed or lost revenue Once a quarter	Once a monthDelayed or lost revenue Once a month	Multiple times per monthDelayed or lost revenue Multiple times per month
Product replacement or bridge-program cost	NeverProduct replacement or bridge-program cost Never	Once a yearProduct replacement or bridge-program cost Once a year	Once a quarterProduct replacement or bridge-program cost Once a quarter	Once a monthProduct replacement or bridge-program cost Once a month	Multiple times per monthProduct replacement or bridge-program cost Multiple times per month
Customer dissatisfaction	NeverCustomer dissatisfaction Never	Once a yearCustomer dissatisfaction Once a year	Once a quarterCustomer dissatisfaction Once a quarter	Once a monthCustomer dissatisfaction Once a month	Multiple times per monthCustomer dissatisfaction Multiple times per month
Other	NeverOther Never	Once a yearOther Once a year	Once a quarterOther Once a quarter	Once a monthOther Once a month	Multiple times per monthOther Multiple times per month

if Please month?

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How much would a durable certification system for qualifying lifelong or irreversible conditions reduce burden?

0 = Not at all 10 = Significantly
0	1	2	3	4	5	6	7	8	9	10

Example: a qualified clinician certifies that a patient has a lifelong, irreversible condition, and that certification remains valid unless medically revoked or updated.

Which concerns most need to be addressed before such a system could work?

Privacy and data security
Accuracy of certification
Preventing misuse
Defining which conditions qualify
Insurer acceptance
Government oversight
Government cost of implementation
Provider workflow
Provider cost of implementation
Patient consent and control
Patient cost of implementation
Other

Choose up to 3.

Which potential benefits matter most?

Less patient paperwork
Less provider paperwork
Fewer delays in care
Lower administrative costs
Better continuity of care
Less stress for patients and caregivers
More efficient insurance processes
Other

Choose up to 3.

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State or jurisdiction most relevant to this response *

Use the place where the care, coverage, paperwork, or policy issue is most relevant.

County, parish, borough, or region

City or town

ZIP code or postal code

Optional. ZIP code can support approximate geographic summaries, but it may not identify exact legislative districts.

Optional: U.S. Congressional district, if known

Optional: State legislative district(s), if known

May this response be used in aggregate geographic summaries? *

Yes, using state/ZIP/county/city information only
Yes, and I may be willing to provide more precise district information in follow-up
No
Not sure

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Please share a brief example of how recurring paperwork, recertification, prior authorization, or medical-necessity documentation has affected you, your family, your patients, or your work.

Optional

May we quote from your story in public materials?

Yes, with my name
Yes, anonymously
Please contact me first
No

Please contact me:

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For a follow-up survey
With survey results, when available

Are you open to being contacted for follow-up?

Name

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