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 three times, in 2015, 2018, and 2021 for care in the prior year, and a fourth survey is set for the spring of 2024.
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, 2018, and 2021 regarding the care they received in calendar years 2014, 2017, and 2020 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. It is much faster and more efficient to just click the link and take the survey online, but most HTCs offer both options to try and capture as many patients as possible.
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?
No. However, some HTCs may share reminder information in their communications or social media platforms.
Where did patients send the completed surveys?
The surveys were returned to the University of Colorado HTC in the first three surveys. The staff there entered all survey data. The fourth survey will be returned to the Oregon Health and Science University.
How many people completed and returned a survey?
In 2015, 5006 people filled out a survey. In 2018, 4767 people filled out a survey. In 2021, 5308 people filled out a survey. These were robust and consistent response numbers that helped us understand a lot about what our patients and families were feeling about their HTC care.
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. In the 2021 survey, we added a question to discover what the impact of the COVID-19 shutdowns may have had on care and we hope some of that data was helpful to understand ways HTCs can treat patients in different ways. Some of our findings can be found in our Results page.
Do you have statistics from my region or center?
Yes. We have posted articles , and posters with data sharing 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 Results section on our website.
I didn't get to participate and I would like to. How can I fill out a survey?
The next survey is scheduled to be sent out in early 2024. The surveys have so far been implemented about three years apart, which has given each center a chance to take their feedback and make improvements. We plan to compare the results of these surveys over time. The hope is that we continue to have a large number of HTC patients complete the 2024 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. The name of the HTC was on each survey (or selected as a dropdown during the online version). Having the name of the HTC on the survey allowed us to categorize responses by HTC and we sent each HTC the feedback 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. If a patient entered identifiable information, it was removed before sending to their center to maintain anonymity.
What is in the survey?
You can see our full survey and all the questions we ask here.