Patient Satisfaction at United States Hemophilia Treatment Centers in 2023

Background: Patient satisfaction is an important metric for healthcare quality and influences outcomes, treatment adherence and reimbursement. However, across healthcare entities, patient satisfaction is typically assessed using local surveys making uniform analysis and trends over time difficult. In 2015, the United States Hemophilia Treatment Center Network (USHTCN) initiated a nationwide, standardized Hemophilia Treatment Center (HTC) Patient Satisfaction Survey (PSS) to evaluate care experiences from the previous year. Subsequently, PSS administration has taken place every 3 years. The aim was to explore patient experience using a bleeding disorders-specific patient satisfaction questionnaire throughout the USHTCN.

Methods: The USHTCN conducted the fourth PSS in 2024, assessing patient satisfaction with care received in 2023. The two-page survey was available for self-administration via paper form and online, in English and Spanish. Questions aligned with federal priorities and other national surveys to enhance comparability and scientific robustness. Regional leaders oversaw survey implementation and HTCs independently managed distribution. The survey included self-reported demographic information and satisfaction with overall HTC care, team members, services and care processes. Additional questions assessed how frequently language, insurance, COVID-19 and distance were barriers to HTC care. An open-ended comment field concluded the survey.

Eligible participants included individuals with a bleeding disorder who had HTC contact in 2023. Participation was voluntary and responses were anonymous. Caregivers completed surveys for patients under 18 years. Surveys were collected from February through June 2024. Paper form data entry is ongoing and combined paper/online data will be analyzed at the coordinating center at national, regional and HTC levels, with aggregated results provided back to HTCs.

Results: Preliminary results include only online surveys from 130 of 142 United States HTCs (91.5%). A total of 2327 eligible online surveys were completed. Respondents were primarily male (64.4%), with a mean age of 36.6 years (range: 0-91). Most respondents identified as white (77.0%), non-Hispanic (82.6%) and had a primary diagnosis of hemophilia (58.0%). Most participants talked to HTC staff 2 to 4 times (43.8%) in 2023 and 23.6% of participants reported at least one telehealth contact.

Ninety-five percent reported being ‘always’ or ‘usually’ (A/U) satisfied with overall HTC patient care received in 2023. Nearly 94% were A/U satisfied with getting care when needed and 95.6% A/U satisfied when reaching the HTC with an urgent need. Satisfaction with the HTC explaining information in an understandable way was reported A/U in 97.2%.

Problems impacting receipt of services at the HTC in 2023 were assessed. Insurance (19.4%), language (1.7%), COVID-19 (3.8%) and distance from HTC (20.0%) were reported as ‘always,’ ‘usually,’ or ‘sometimes’ (A/U/S) a problem when accessing HTC services.

Conclusions: In this fourth survey administration, online respondents reported high satisfaction with overall care across the USHTCN in 2023. This preliminary data from online respondents regarding insurance, language, COVID-19 and distance as barriers to receiving care at the HTC requires further investigation and cross-analysis with demographic data and reported satisfaction. Additional pending analyses include specific focus on participants reporting non-male gender, non-White race and diagnoses other than hemophilia or von Willebrand disease. Combined online and paper survey data for full analysis is underway. Assessing patient experience helps identify strengths and areas for healthcare improvement, which are important for people with chronic illness. A nationally administered HTC patient satisfaction survey remains feasible, is supported by HTCs and provides valuable information and feedback from patients and families.