New Paper Published on the First National Patient Satisfaction Survey of U.S. HTCs

The federally funded hemophilia treatment center (HTC) network, with its model of a multidisciplinary care team (MDT) and regional infrastructure, has proven itself, over several decades, to be well suited to deliver quality, integrated healthcare to bleeding disorders patients across the U.S. While this system has allowed for various surveillance and data collection projects focused on patient demographics, clinical status, and mortality, it has not, until recently, been leveraged to gauge patient satisfaction on a national level.

The authors of a new paper published in the journal Haemophilia posit that patient satisfaction with the delivery of care is an important metric that is associated with treatment adherence and better overall health outcomes. Therefore, a first-of-its kind nationally uniform and comprehensive patient satisfaction survey (PSS) was conducted and made possible via the coordination of the HTC network’s robust regional infrastructure.

A steering committee made up of three of the network’s regional coordinators initiated and managed the PSS. They were guided by performance standards of the hemophilia program of the U.S. Health Resources and Services Administration (HRSA); the agency provides limited funding to support the eight designated regions that make up the HTC network.

The survey was designed to assess patient demographics, their satisfaction with the HTC’s core MDT, plus affiliated clinicians, services, and care processes. The MDT core includes the hematologist, nurse, nurse practitioner, social worker, and the physical therapist. In addition, three fundamental HTC services were rated, including shared decision making and care coordination with both the primary doctor and with other specialists/providers. Lastly, five key HTC processes were evaluated for patient satisfaction: timeliness of care, ease of getting needed information, ease of understanding how the HTC clinic staff explained things, time spent with clinic staff, and being treated with respect.

All 138 HTCs that were operating in 2014 were invited to participate in the PSS. The eight regional coordinators of the Network helped facilitate the promotion and dissemination of the survey to HTCs and provided technical assistance to ensure a nationally consistent administration. In February-March 2014 the survey was disseminated to an estimated 28,289 households of patients with which the HTC had a “significant clinical interaction” that same year. The subsequent data collection period through June of 2015, with the University of Colorado serving as coordinating institution for all data collection and aggregation. To make possible comparisons to other populations, regions were collapsed from eight to four standard regions including West, Midwest, South, and Northeast.

The overall participation rate for HTCs was high as 133 or 138 centers (96.4%) opted into the survey. In sum, 5006 individuals who received care from a center in 2014 completed the PSS, representing a 17.7% national response rate. At 29.2%, females represented almost a third of the participants, the majority of which were White, non-Hispanic. A look at participants grouped by age shows a fairly even breakdown amongst the groups, while there were significant differences in participation levels amongst the four geographic regions with 42.1% (2109) from the Midwest, 27.9% (1398) from the Northeast, 19.0% (952) from the West and 10.9% (547) from the Southeast. The majority of the respondents, 3,106 (62%) had hemophilia, 1299 (25.9%) had von Willebrand disease (VWD), and 601 (12.0%) reported diagnosis as “other,” “unknown” or did not specify. Overall, those with a severe hemophilia and type 3 severe von Willebrand disease represented 29.4%, of respondents, while those with a moderate bleeding disorder, including VWD type 2 or moderate hemophilia accounted for 17.8% of participants. Those with a mild bleeding disorder (VWD type 1 or mild hemophilia) comprised the largest group at 32.8%.

By virtually all measures, results of the PSS suggest consistently high levels of satisfaction with HTCs amongst the more than 5,000 respondents. Overall, 94.2%-97.9% reporting responded that they were ‘always’ or ‘usually’ (A/U) satisfied with the overall care they received at their center. Participants also rated highly their satisfaction with members of their HTC’s core MDT, including the hematologist, nurses, nurse practitioners, social workers, and physical therapists (PTs). A national breakdown by member showed that 97.3% of respondents were A/U satisfied with the hematologist, 97.0% with the HTC nurse and nurse practitioner (combined), 95.1% with the social worker and 95.6% with the PT.

HTC care processes considered integral to PSS also scored very well nationally, with more than 95% of respondent’s A/U satisfied with each of the five processes. These included timeliness of care (94.9%); ease of getting needed information (95.0%); ease of understanding how the HTC clinic staff explained things (97.3%); time spent with clinic staff (97.0%); and being treated with respect (98.0%). On a regional level, A/U satisfaction for each of the five care processes was at least 91.2%.

The survey also reflected well on transition issues nationally. Of respondents aged 12-17 years, 90.2% reported being A/U satisfied with how their HTC talked about how to care for their bleeding disorder as they became adults. Similarly, 92.8% of adolescents were A/U satisfied with how their HTC encouraged them to become more independent in managing their bleeding


The authors point to this initiative’s success as a “proof of concept” in the far-reaching utility of a regional infrastructure to deliver meaning and impactful national assessments now and in the future.

“This HTC PSS initiative provides new national data, reducing evidence gaps in quantifying the extent to which patients value the different healthcare professionals on the integrated HTC team, HTC services, processes and overall care. These high levels of patient satisfaction were articulated regardless of patient diagnoses, severity of disease, gender, race or ethnicity, or geographic location, and pose several implications, “explained the authors. “First, these data indicate that patients highly value the HTC multidisciplinary team approach.”

While the authors do acknowledge limitations, including an imbalance in regional representation, the take home message remains the same; there exists a strong correlation between patient satisfaction and quality of care. Further, such PSS data may be employed in various advocacy efforts, to engage payers, and ensure the viability of the HTC Network.

“The high level of patient satisfaction documented in this inaugural national survey of the US HTC Network’s ambulatory services has several important policy implications. Specifically, in the United States, access to HTC care must be guaranteed,” conclude the authors. “All payers must include HTCs in their networks to maintain high-quality patient care.”

Source: Riske B, Shearer R, Baker J. Patient Satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey. Haemophilia. 23 October 2020.

Back to all News