Frequently Asked Questions

What is the National HTC Patient Satisfaction Survey (PSS)?

The Hemophilia Treatment Center (HTC) National Patient Satisfaction Survey (PSS) is a brief set of questions that gives people with hemophilia, von Willebrand Disease and other inherited bleeding disorders a chance to say what they think about HTC care across the US. It further provides the opportunity for patients to make suggestions on how to improve HTC care. The survey has been conducted twice, in 2015 and 2018.

Why do we need the PSS?

The purpose of HTCs is to give patients – and people with suspected bleeding and clotting disorders – the best clinical care services, to help them live long healthy lives. So what patients think about their HTC care is important. Information on what HTCs are doing well and where HTCs need to improve services is valuable. Some individual HTCs do conduct patient satisfaction surveys, but the PSS is the first and only nationwide survey of HTC patient satisfaction. With nearly all HTCs using the same survey, we can discover if there are differences in patient satisfaction with HTC care across the country and over time.

When did you send out this survey?

HTCs sent the PSS to patients/families at the beginning of 2015 and 2018 regarding the care they received in calendar years 2014 and 2017, respectively. 

Who was the survey sent to? Was the survey handed out in clinics, or mailed?

HTCs sent surveys to all households where a patient with a bleeding disorder lived. We asked parents or caregivers to fill out the survey if the patient was under 17 years old. In most cases, HTCs mailed out the surveys and/or provided a link to the online survey. A small number of surveys were handed out in clinic. 

Could the PSS be filled out online or just on paper?

Both! The instructions on the PSS letter had a link to allow patients to fill out the PSS online.

Was the survey just in English?

No, the PSS was in both English and Spanish: both the online and paper versions.

Did patients get a reminder if they forgot to fill out a survey?


Where did patients send the completed surveys?

The surveys were returned to the University of Colorado HTC. The staff there entered all survey data.

How many people completed and returned a survey?

In 2015, 5006 people filled out a survey. In 2018, 4767 people filled out a survey. This is a great response, especially since we did not send any reminders.

What did you find out?

Most patients were “usually” or “always” satisfied with HTC information and services. But, as expected, there are areas where HTCs can continue to improve. Also, some barriers to care (including language and insurance) were seen more in certain parts of the country than in others. The PSS patients and caregivers feedback helps us to know what kinds of things that each center, each region, and nationwide need to work on to improve care.

Do you have statistics from my region or center?

Yes. We have posted articles and graphics that share what we found. We do not post individual HTC-level data but the survey responses have been shared with each HTC and their regions. Please see the “News” section on our website.

I didn't get to participate and I would like to. How can I fill out a survey?

The second national survey is now complete, so it is no longer available. However, we hope to continue repeating the PSS regularly, about every three years. The next survey is scheduled to be sent out in early 2021. This time frame gives each center a chance to take the feedback and make improvements. We plan to compare the results of the surveys over time. The hope is that we continue to have a large number of HTC patients complete the 2021 survey, and we will see improvements in satisfaction with HTC care.

Was this survey anonymous?

Yes. The PSS was anonymous. There are no patient names or addresses on the PSS. But the name of the HTC was on the survey. Having the name of the HTC on the survey allowed us to categorize responses by HTC, and we sent each HTC the feedback just from their own patients. The feedback that we sent to each individual HTC did not have the patients name or address or other identifying information.

What was in the survey?

You can see our full survey and all the questions we asked here.