More than 5,000 Respond to National Survey of US Hemophilia Treatment Centers

Published on in Beyond Blood

What do people with bleeding disorders really think about their Hemophilia Treatment Center (HTC)? How satisfied are they with their care? Are there groups of patients that have specific problems getting the HTC services they need?

These are some of the questions that more than 5,000 people with bleeding disorders answered in the first national survey of HTC patient satisfaction.

What is the National HTC Patient Satisfaction Survey?

In early 2015, HTCs in the United States sent out a survey to their patients, called the Patient Satisfaction Survey (PSS). The two-page PSS was designed using questions similar to other national surveys that included input from the 10 HTC Regional Coordinators. The intent was to measure the level of satisfaction with care that people received at their local HTC during 2014.

Each center mailed paper copies to their patients or provided an online option. While all surveys were anonymous, the form indicated the name of the center where the patient received care. Patients returned completed surveys to the HTC at the University of Colorado, which compiled and shared the results with each region and center.

Why was the survey conducted?

While many centers have conducted their own satisfaction surveys in the past, this was the first survey of how HTCs nationwide are doing. The surveys were sent from 133 centers to more than 28,000 patients or their caregivers, representing more than 95 percent of all HTCs in the United States. The feedback is valuable to centers and delivers a snapshot of national, regional and local views of success and areas for improvement.

Patients responding included those with bleeding disorders such as hemophilia A, hemophilia B and von Willebrand disease. The survey was in both Spanish and English, asked about severity, age, race and ethnicity, and allowed people to rank the level of satisfaction with care received. Survey included the option to write in comments on what their center was doing well or how it could improve.

What will be done with the results?

The PSS responses describe satisfaction with HTC care throughout the country. While most surveys showed a high level of satisfaction, some responses were not as positive.

The results showed that patients have different challenges with their care around the country, including insurance access, language barriers and communication with staff. Patients described what worked well and what did not at their center, providing details that may not have been received as openly from patients in person. This vital patient feedback helps all centers focus on what services need to improve at the local, regional and national levels.

The results of the 2014 – 2015 Patient Satisfaction Survey led national leaders to agree that surveys should be sent out every two years to see if positive change is occurring at centers over time and to help identify trends in patient satisfaction. The hope is that an increasing number of patients will participate, growing the feedback regarding satisfaction, which is an important measure of quality of care.

The next survey is tentatively scheduled to be sent out in 2017. Regional HTC leadership thanks all patients and caregivers who participated and the HTCs for their collaboration.

CHOP results

Out of the over 5,000 surveys that were returned in response to the Patient Satisfaction Survey, 57 were from CHOP patients and families. These surveys showed very high levels of satisfaction. In fact, 100 percent of respondents indicated they were always or usually satisfied with their hematologist at CHOP! More than 94 percent of respondents said they always or usually were able to get HTC care as soon as it was needed. We are glad to see that our patients are satisfied with our providers and services. We are always interested in how we can improve, so please tell us how we can continue to best meet your family’s needs.