However, the patients also said they worried about insufficient care coordination between specialists and other care providers.
Patients with hemophilia appear to be generally satisfied with their care, according to a new study from the Netherlands, but they also would like to see improvements in care coordination and patient education.
This study was based on questionnaires and interviews of Dutch patients with hemophilia and their health care providers. It was published in Research and Practice in Thrombosis and Haemostasis.
The authors said hemophilia can have a significant impact on patient quality of life, although to what extent depends somewhat on the severity of their disease. They said improvements in the treatment of hemophilia have led to improvements in outcomes, such as longer life expectancy, decreased annual bleeding rates, and improved social participation.
“Yet, people’s perception of the quality of their care is not only determined by these health outcomes alone,” they said.
Other factors, such as the burden of treatment administration, relationships with health care providers, and coordination of care can also affect a patient’s perception of their care quality. Additionally, the development of new digital health tools can affect patient care, they noted.
To better understand how new advances and other factors have affected patient satisfaction levels, the investigators decided to survey patients and health care providers. They used a nationwide questionnaire answered by 867 adult and pediatric patients with hemophilia A or B and then conducted semistructured interviews with 19 people with hemophilia or their parents and 18 health care providers.
Overall, 96% of respondents said they were either “satisfied” or “very satisfied” with their care.
“Participants in the interviews reported that patient–professional interactions, availability of care, and coordination of care were major factors determining satisfaction,” the authors wrote.
The highest-rated domains on the questionnaire were “specialist/nurse” and “center/hospital,” suggesting that they were happy with their level of access to care and the provision of health care information.
However, the surveys and interviews also indicated that while patients were satisfied with their specialist’s care, they did not always feel like the specialist’s expertise carried over to providers outside of the specialist’s clinic.
“While centralization resulted in well-organized comprehensive care centers, it also led to a lack of knowledge among other professionals,” the investigators said.
Sixty-three percent of respondents said they felt confident that their prophylaxis could prevent bleeds, and just 12% said their treatment interfered with their daily life. The “efficacy,” “burden,” and “ease of administration” domains had the lowest scores on the patient surveys.
The respondents said better care coordination would boost their satisfaction, and they also wanted wider use of tools like telemonitoring and teleconsulting to help facilitate self-management, according to the authors. Asked about the role of digital health tools in managing their care, the respondents expressed a range of views.
“Conflicting views became apparent between digitally proficient and less proficient users, and participants with high and low health literacy,” the authors said. “This underlines the need for care to remain inclusive.”
Still, the investigators said both patients and providers were generally open to wider use of digital tools. They said the survey and interviews show patients have a high level of satisfaction, but they said both patients and providers also see clear areas where they could improve.
Brands MR, Haverman L, Muis JJ, et al. Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study. Res Pract Thromb Haemost. Published online April 23, 2023. doi:10.1016/j.rpth.2023.100159