Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey

Abstract

Patient satisfaction with healthcare delivery is a key quality metric, associated with treatment adherence 1 and better health outcomes. 2,3 In the United States, this metric can prompt enhanced reimbursement, 4,5 important in the US healthcare system for continued financial support of Hemophilia Treatment Centers (HTCs). The multidisciplinary healthcare team (MDT), a chief element of the patient-centered medical home model for primary care, is increasingly the focus of patient satisfaction. 6 The MDT has its roots in the model of care for children with complex, chronic and rare conditions, 7 many of whom have now grown to adulthood. 8

Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

“…In a Dutch questionnaire study among adolescents, it was found that adolescents’ illness‐related distress did not differ before and after transition 19 . In a US questionnaire study among adolescents, 92% reported to be satisfied with the introduction of self‐management skills 20 . The Canadian, US and Dutch transition programs are very similar 36–38 .…”

“…19 In a US questionnaire study among adolescents, 92% reported to be satisfied with the introduction of self-management skills. 20 The Canadian, US and Dutch transition programs are very similar. [36][37][38] Transition readiness among adolescents with haemophilia in our study (49% was (almost) ready) is similar to Dutch adolescents with any chronic condition (56%).…”

“…Yet, knowledge on the impact of transition programs on how adolescents and young adults perceive transition is limited. Previous studies either assessed outdated Dutch transition programs, or recently‐implemented international programs 17–21 . Although transition programs aim to improve treatment adherence, health‐related quality of life, and self‐efficacy, associations between transition readiness and these characteristics in haemophilia care remains unknown 12 .…”

“…Previous studies either assessed outdated Dutch transition programs, or recently-implemented international programs. [17][18][19][20][21] Although transition programs aim to improve treatment adherence, health-related quality of life, and self-efficacy, associations between transition readiness and these characteristics in haemophilia care remains unknown. 12 Yet, these insights are crucial to further improve current transition programs.…”

Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders

“…Nationally, over 90% of respondents, regardless of age, sex, race, ethnicity, diagnosis, disease severity, or where they lived, reported being usually or always satisfied with overall HTC care; components of HTC care (each >90% satisfaction nationally) were core team members, HTC care processes and services, and adolescent transition to adult care guidance. 55 , 56 Addressing patient satisfaction also involves finding areas for improvement. In 2013, the National HTC Patient Needs Assessment Survey was mailed to PWH being actively treated at 129 HTCs.…”