Patients appear to be satisfied with care received at US hemophilia treatment centers (HTCs), suggesting that this patient population places a high value on HTCs, which use a multidisciplinary treatment approach, according to survey results published in Haemophilia.

While patient satisfaction with treatment is an important factor for both adherence and clinical outcomes, it can also drive needed funding to support centers that focus on patients with rare disease. HTCs consist of a multidisciplinary treatment approach that is specialized for these patients who require complex and layered treatment programs.

While many previous research projects have focused on obtaining and analyzing demographic and clinical data, patient satisfaction with the HTC system has not previously been evaluated. For this study, researchers conducted a national patient satisfaction survey to evaluate the views and rate of treatment satisfaction of patients treated at an HTC.

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Overall, 5006 patients who received care at any of 133 of 138 HTCs in 2014 responded to the survey. Most of the population (79.9%) was White, 70% were male patients, and 56.4% were aged 1 to 34 years. Pediatric patient surveys were completed by parents or caregivers.

Irrespective of demography or clinical status, patients rated satisfaction of “always” or “usually” (AU) at a rate of 94.2% to 97.9%. Individual AU satisfaction with hematologist, nurse, social worker, or physical therapist ranged from 95.1% to 97.3%. Across regions, patients reported being always or usually satisfied with all evaluated HTC services at a minimum rate of 88.3%.

“This first national survey of patient satisfaction from 133 (96.4%) centers in the US Hemophilia Treatment Center Network used the network’s regional structure for implementation and accrued 5006 individual responses,” the authors wrote. “The overwhelming majority of respondents were always or usually satisfied with overall HTC care, with core HTC clinical team members, services, and processes.”


Riske B, Shearer R, Baker JR. Patient satisfaction with US hemophilia treatment center care, teams and services: the first national survey. Haemophilia. Published online October 23, 2020. doi:10.1111/hae.14176