Hemophilia patients in the Netherlands very satisfied with care

However, they'd like more information about new treatments and costs, survey finds

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Most people with hemophilia responding to a survey in the Netherlands were generally satisfied with their treatment care.

Patients’ interactions with healthcare professionals, availability of care, and coordination were cited as the most important factors for satisfaction.

However, they reported improvements were needed regarding information about new treatments, their costs, coordination between healthcare providers, and digital health tools.

Findings from the survey were detailed in the study, “Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study,” published in the journal Research and Practice in Thrombosis and Haemostasis.

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Hemophilia is a blood disorder characterized by a deficiency or dysfunction of specific clotting factors — proteins that promote blood clotting. Current treatments for hemophilia are based on providing the missing clotting factors as prophylaxis to prevent spontaneous bleeding episodes and other complications.

While prophylactic treatment can be self-administered at home, patients also can visit hemophilia centers to receive clotting factor infusions.

In the Netherlands, according to the study’s introduction, there are six comprehensive hemophilia care centers that provide specialized multidisciplinary care. Improvements in hemophilia care and support structure have improved life expectancy, reduced bleeding rates, and improved social participation.

How patient views were assessed

Now, a team led by researchers at the University of Amsterdam conducted a survey to assess patient views on the quality of hemophilia care in the Netherlands.

Participants were asked to complete the Hemophilia Patient Satisfaction Scale (Hemo-Sat), a hemophilia-specific care satisfaction questionnaire. They also were given the Canadian Hemophilia Outcomes — Kids Life Assessment Tool (CHO-KLAT), a hemophilia-specific questionnaire designed to evaluate health-related quality of life in children and adolescents.

Participants also were asked to rate their care satisfaction using a Visual Analogue Scale (VAS), and to answer a few open questions.

Researchers investigated factors linked to care satisfaction, and identified areas for improvements. Semi-structured interviews to gather data from patients and healthcare providers also were used.

Of 2,191 hemophilia patients who were invited to participate in the study, 1,009 (46%) completed the questionnaires.

The majority (80%) were adults, 6% were adolescents, and 14% were parents of young children (ages 0-11 years). More than a third of the patients (39%) had severe hemophilia, and nearly all of them (91%) were on prophylaxis.

The median Hemo-sat score of adults and parents of children with hemophilia was 12, indicating a high overall satisfaction. Its scores range from zero to 100, with lower scores indicating a better health-related quality of life.

Overall, 96% of adults and parents considered they were satisfied or very satisfied with their care. Lower satisfaction rates were linked to “treatment efficacy,” “burden,” and “ease and convenience.” Parents had lower satisfaction scores regarding burden when compared with adults.

More than half (63%) of adults and parents reported being very confident that adequate prophylaxis could prevent bleeds. But 12% recognized treatment strongly interfered with everyday life.

According to CHO-KLAT, 87% of adolescents reported to be “often or always” satisfied with their treatment. Infusions were often or always burdensome for 8% of young respondents. Other treatment aspects, such as resting after a bleed, were often or always considered burdensome by 19% of them.

Adult patients and parents of children with hemophilia rated their care with a mean VAS score of eight over the past year. VAS scores ranged from one (lowest) to 10 (highest).

Open questions included in survey

A total of 449 participants responded to open questions regarding the factors that influenced their treatment satisfaction. A total of 79 adults referred to healthcare costs were “too high.” Forty-two said that collaboration between healthcare professionals at comprehensive centers and outside providers was not optimal, while 15 raised concerns regarding the lack of knowledge about hemophilia among healthcare professionals outside care centers.

Next, researchers asked participants to elect one area to be improved. About a third of adults (33%) would lower healthcare costs and 21% would improve coordination between healthcare providers. Additionally, 53 adults and parents would like to be more informed frequently about new treatments and were open to using digital health tools to achieve this goal.

Finally, researchers interviewed 19 patients to gauge perceptions about their own care. More than half (58%) of the respondents in this group had severe hemophilia and 63% were on prophylaxis. In addition to patients, the team also interviewed 18 healthcare providers.

Patients reported that their interaction with healthcare professionals, availability of care, and coordination of care were the most important factors for satisfaction.

All respondents were very satisfied with healthcare providers at comprehensive care centers and reported strong patient-provider bonds. Most patients also considered that availability of care at these centers was excellent, as was the collaboration between healthcare professionals. In general, healthcare professionals agreed with patients’ perspectives.

Improve communication

Similarly to the questionnaires, interviewed participants also considered communication between professionals working within a comprehensive care center and outside to be limited.

“Care is good. However, collaborations and coordination between hospitals and primary care, and between healthcare providers in different institutions could be better,” said one patient with severe hemophilia A.

Digital health tools (teleconsulting, for example) could improve hemophilia care, according to patients and healthcare professionals.

Despite the overall high level of satisfaction, “patients and healthcare providers suggested to improve the coordination of care, especially for patients in contact with many different healthcare providers or with providers unexperienced in treating people with hemophilia,” the researchers wrote. “Both patients and professionals anticipated digital health tools might help in achieving this.”