Frequently Asked Questions
What is the National HTC Patient Satisfaction Survey?
The National Hemophilia Treatment Center (HTC) Patient Satisfaction Survey (PSS) is a two-page survey that gives people with hemophilia, von Willebrand disease, and other bleeding disorders a chance to give feedback about care received at their HTC. Patients can give suggestions on how to improve care received at the HTC.
Why is a PSS needed?
The goal of the PSS is to find ways to improve care for patients and families with bleeding disorders. With all United States HTCs using the same survey, we can see if there are differences in satisfaction with HTC care across the country or areas of challenge that can be addressed on a broader level.
When is the PSS sent?
HTCs have sent the PSS to patients/families every three years since 2015. The 5th PSS will be sent in January 2027 regarding care received at the HTC in 2026.
Who is the PSS sent to?
HTCs will mail the PSS and information to all patients with a bleeding disorder who had two-way contact with the HTC in 2026.
How is the survey completed?
The PSS can be either on paper or online. The PSS letter has a QR code and link to allow patients to fill out the PSS online. Or the paper PSS can be completed and returned in the self-addressed envelope. Some HTCs may hand out surveys in clinic. The survey should only be completed once per patient.
The survey is available in both English and Spanish languages, both online and on paper.
Do patients get a reminder if they forget to fill out the survey?
No. Some HTCs may share reminder information in their communications or social media platforms.
Is the PSS anonymous?
Yes. The PSS is anonymous. There are no patient names, addresses or other identifiers on the survey. The HTC name is on each survey, which lets responses be returned to the correct HTC. Any potentially identifiable information is removed from responses before sent to HTC to keep it anonymous.
Where do the PSS responses go?
Surveys are mailed to the coordinating center at Oregon Health & Science University where the data is sorted by HTC and compiled into HTC, regional, and national data.
How many surveys are returned?
Over 5300 patients participated in the last PSS cycle in 2024!
What do you learn from the PSS responses?
Most patients were “usually” or “always” satisfied with HTC care and services. But, there are areas where HTCs can continue to improve. Some things, like insurance and distance, can be a problem when receiving care at the HTC.
Can results be shared from my HTC or region?
Articles and posters have been created to share national PSS results. HTC-level responses are shared with individual HTCs and their regions. Please see the Results section for more information.