Publications 2016-11-07T21:10:00+00:00


Patient Satisfaction with HTCs – National Results

Over 5000 Respond to National Survey
of US Hemophilia Treatment Centers

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 with getting the HTC services they need? These are some of the questions that over 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 using input from the ten 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 over 28,000 patients or their caregivers, representing over 95% of all HTCs in the US. 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. Questions 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 to the HTC 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 increased 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 thank all patients and caregivers who participated and the HTCs for their collaboration.

For more information go to:


March 28th, 2016|

Press Release: Analysis of Outcomes of Hemophilia Care


From the newsroom of American Society of Hematology:

The Center For Inherited Blood Disorders (CIBD) has been listed as one of the affiliates of Judith Baker, co-author of the manuscript: Men with Severe Hemophilia in the United States: Birth Cohort Analysis of A Large National Database. Published online in Blood as a first edition, and getting promoted by both the CDC and ASH.  Link to Blood abstract:

Paper Reference

Mazepa MA, Monahan PE, Baker JR, Riske BK, and Soucie JM.  Men with severe hemophilia in the United States: birth cohort analysis of a large national database. Blood. Jan 2016, DOI: 10.1182/blood-2015-10-675140.



ASH issued a press release on its website here.

Here is some initial coverage of the manuscript.

March 20th, 2016|

Women Leaders in Hematology

maxresdefaultFrom the American Journal of Hematology:

Dear Western States/Region IX HTC Clinicians and Hemophilia Foundation/Council/Association Colleagues –

In honor of women’s month, see the attached for women leaders in hematology.

Our region’s very own Carol Kasper, MD and Diane Nugent, MD are featured!


March 19th, 2016|

Published!- Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands

ajph.2016.106.issue-2.largecoverKathryn, Diane, CDC, NHF, HFA, WFH, and Regional Coordinators Colleagues:

I’m proud to report that our regional bleeding disorder health services capacity building work in a US Pacific jurisdiction is published in the American Journal of Public Health. The article and abstract are below.

Am J Public Health. 2016 Feb 18:e1-e4.

[Epub ahead of print]

Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands.

Authors: Lin TF, Carhill P, Huang JN, Baker JR.


The US Pacific Commonwealth of the Northern Mariana Islands is home to an underserved hemophilia population. We developed a strategy in 2014 to build sustainable island-wide medical, patient and family, and community support for this rare disease. Collaboration with regional bleeding disorder leadership galvanized a weeklong conference series. More than 200 participants attended discipline-specific seminars; pre-post test evaluations documented educational benefits. This time-concentrated island-wide education intervention promoted the rapid identification of new cases and stimulated sustainable bleeding disorder care development. The education series proved feasible, efficient, and effective in increasing knowledge and reducing patient and professional isolation, serving as a model for improving capacity for orphan diseases (those that affect fewer than 200 000 people in any particular country) in underresourced areas. (Am J Public Health. Published online ahead of print February 18, 2016; e1-e4. doi:10.2105/AJPH.2016.303093).

February 19th, 2016|