People living with bleeding disorders such as hemophilia and von Willebrand disease report consistently high levels of satisfaction with the care they receive at U.S. hemophilia treatment centers (HTCs), according to the results of the U.S. HTC Network’s first national survey.
Most respondents said they were satisfied with HTC staff and services across the board, although the survey identified issues related to insurance and receiving care in languages other than English.
The study, “Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey,” was published in the journal Haemophilia.
Patient satisfaction often corresponds to treatment adherence and better health outcomes, making it a useful way to measure quality of care. As such, large patient surveys become useful means for identifying the strengths and weaknesses of a given healthcare system.
The U.S. Health Resources and Services Administration (HRSA) provides funding to support the U.S. HTC Network. In 2012 HRSA released new requirements for documenting the impact of HTC services, strengthening patient input, and fostering the transition from adolescent to adult care.
This prompted the HTC Network to conduct its first national survey, which ran from February to June 2015. Responses from 5,006 individuals (a 17.7% national response rate) who obtained care in 2014 came from 133 HTCs.
A total of 3,106 respondents (62%) had hemophilia, 1,299 (25.9%) had von Willebrand disease, and the remaining 601 reported other conditions or did not specify their diagnosis. People with severe disease accounted for 29.4% of the group, those with moderate disease for 17.8%, and participants with mild disease for 32.8%. The higher proportion of respondents was found in the Midwest (42.1%), followed by the Northeast (27.9%), the West (19%), and the Southeast (10.9%).
Approximately 30% of respondents were female, nearly 80% were white, and most responses (42.1%) come from the Midwest.
Results showed that a commanding majority of respondents — between 94.2% and 97.9% — reported feeling “always or usually” satisfied with their HTC care overall, regardless of age, ethnicity, sex, or other factors.
Respondents reported similar levels of satisfaction with the individual members of their HTC team, which consists of a hematologist, nurse, nurse practitioner, social worker, and physical therapist. Satisfaction with each team member ranged between approximately 95% and 97% — again, regardless of demographics.
Nearly 97% of respondents reported feeling “always or usually” satisfied with how HTC staff engaged them in decision-making about their care. Similar high proportions felt the same level of satisfaction with how HTCs coordinated care with a patient’s primary care provider (89.5%) and with specialists (nearly 93%).
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 saw satisfaction rates of 95% or more.
Between 90% and 93% of adolescents felt “always or usually” satisfied with how their center helped them manage transition from adolescent to adult care.
Respondents rated insurance as an obstacle to getting needed HTC care. Nationally, 26.4% reported this as a problem, with the rate rising to 31.3% in the West.
Of the respondents who needed language assistance — notably, 2.6% of respondents filled out the Spanish version of the survey — 21.2% said it was always or usually a problem. The highest proportion, 25.9%, came from the West.
The researchers said the higher prevalence of problems with insurance and language in the West was expected. This region is home to more non-English speakers, most of whom are Hispanic. This community’s challenges in obtaining insurance, the team added, are well-documented.
Based on the survey’s results, the HTC Network recommends all payers include HTCs in their networks and that policies “should prohibit health plans from delaying, denying or modifying HTC diagnostic and treatment recommendations,” in order to foster health equity, the scientists wrote.
The specialized services found at an HTC often require more time than the typical 10–15 minute visit, the investigators said, and payers should reimburse care centers adequately for their services.
“Adequate reimbursement is particularly critical today,” the researchers wrote, “so the U.S. HTC Network, and other rare disorder population centers, can facilitate safe patient access to new novel therapies, including gene therapy, that promise enhanced wellness.”
“Lastly,” they added, “the U.S. HTC Network’s regional leadership, and leaders from each of the core team disciplines, as well as patients and patient advocates, must be involved in shaping policies and advocacy strategies to promote HTC sustainability.”
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