Working to find ways improve patient care and support.

As part of our mission to identify gaps in services and improve access to care for people with bleeding disorders, the NHPCC conducted the first-ever National Patient Needs Assessment. This assessment serves as the foundation for establishing national priorities for quality improvement to optimize the care of persons with bleeding disorders.

The National Patient Needs Assessment was conducted to better understand the following:

  • The extent to which patients felt they received the care, services, and education the needed
  • How well the services patients received met their needs
  • Patient perceptions of care delivery including barriers to care, interactions with providers, and coordination of care
  • Whether adolescents received transition planning

The results from over 4,000 respondents show that, overall, HTCs are providing care and services that meet the needs of their patients:

  • Less than 3% of the respondents reported they needed services and information they did not receive across a wide range of categories
  • The degree to which services and information met needs was very high—often with 70% to 80% giving the highest rating
  • 90% of respondents reported receiving patient-centered, culturally sensitive care, as well as reported that HTC staff listened and spent enough time with them

The assessment also identified some areas that could be improved, such as adolescent transition, access to care for minorities, ways to serve individuals who are geographically distant from the HTCs, and better insurance coverage for dental and genetic testing services.