Physical Therapy Services Survey: PSP and Related Diseases

Patient advocacy is a critical mission of CurePSP. In our commitment to patients and families living with PSP and related prime of life neurodegenerative diseases, we intend to lobby in support of ongoing therapeutic services at both the state and national levels. We strongly believe that these services not only help to improve the quality of life of patients and care partners, but also help to reduce the rate of increasing disability with disease progression. We will use your responses, as patients and care partners, as well as the responses of healthcare professionals, to better understand current healthcare practices. It is our first aim to better identify the reasons behind discontinuation or denial of outpatient physical therapy services.

This (4) question survey is the first step in gathering information on current healthcare practices. For the purpose of this survey, please consider only outpatient physical therapy services provided at a clinic location(hospital-based outpatient clinic or private practice clinic). We will review the most recent outpatient physical therapy service plans completed or discontinued in 2018 or 2019. Caregivers who are interested in completing this survey in memory of their loved one whose physical therapy services were completed or discontinued during their illness progression, but who has since passed away from a prime of life disease, are encouraged to do so.

Your participation in this survey will help in our collective quest to create widespread change in the standard of care for families living with neurodegenerative diseases. We thank you for taking the time to complete the survey and share your story.

Update: In light of the current situation we find ourselves in global health, please only consider therapy plans that were completed prior to February 1, 2020. Do not complete a survey response if the reason for discharge was related to precautionary measures associated with coronavirus.

Question Title

* 1. My loved one was most recently diagnosed with _____ by a neurologist.

Progressive Supranuclear Palsy (PSP)

Multiple System Atrophy (MSA)

Corticobasal Syndrome/Degeneration (CBS/CBD)

Lewy Body Dementia or Dementia with Lewy Bodies (LBD/DLB)

Frontotemporal Dementia (FTD)

Amyotrophic Lateral Scleriosis (ALS)

Other (please specify)

Question Title

* 2. My loved one’s primary insurance provider at the time of outpatient therapy services was:

Medicare (Medicare Part B)

Medicare Advantage (Medicare Part C)

Medicaid

TRICARE

Private (Anthem, BCBS, Cigna, etc.)

Personal Pay

Charity Care / Financial Assistance

Other (please specify)

Question Title

* 3. My loved one’s outpatient therapy plan of care was interrupted or discontinued due to:

Consultation (i.e. visit was a one-time event for recommendations and assessment of current status, commonly at an academic institution with a recognized specialty clinic)

Restricted insurance authorization by private insurance

Medicare/Medicaid insurance cap

Personal financial burden (i.e. co-pay, travel costs, etc.)

Skilled services were no longer required based on the therapist’s assessment

Discontinuation recommended by a physician

Fall and/or injury with hospitalization or other necessary skilled services

Planned medical procedure (ex.botulinum toxin injection, deep brain stimulation, feeding tube placement, etc)

Non-traumatic medical complication requiring hospitalization or other skilled services. For example, a urinary tract infection with hospitalization or a transition to hospice services in the home.

Patient request for personal reasons not described above

Care partner request for personal reasons not described above

Death

Other (please specify)

Question Title

* 4. Please feel free to use the following space to share any additional thoughts, comments, or a personal story related to your experience with outpatient physical therapy.