Objective:
Patient satisfaction with healthcare services is a measure of patient centeredness, influences treatment adherence, and increasingly affects reimbursement. In 2018, the US Hemophilia Treatment Center Network (USHTCN) launched the second national Patient Satisfaction Survey (PSS).
Methods:
A Steering Committee and Regional HTC Coordinator work group updated, piloted, and finalized the two-page survey for patient self-administration online, at clinic, or at home, in English or Spanish, and mailed to households. Survey content and format were based on national health surveys to enhance comparability and scientific robustness. Questions included assessed patient demographics, satisfaction with team members, and care processes aligned with HRSA goals. An open ended question sought qualitative data. Respondents were anonymous but the HTC where they received care was identified. Participation was voluntary. Persons with genetic bleeding disorders who had HTC contact in 2017 were eligible. Since March 2018, HTCs sent surveys to approximately 31,650 households. Parents were asked to complete surveys for children under age 15. No reminders were sent. Data were entered and analyzed at a central site and aggregated at national, regional and HTC levels. Survey remains open through summer 2018.
Results:
4042 individuals (12.8%) from 125 (90%) of the 139 Centers in the USHTCN returned surveys by June 12, 2018. National analyses on 4042 surveys reveal that 93% - 98% were ‘always’ or ‘usually’ satisfied with HTC care processes: shared decision making (97%); care coordination (97%); obtaining understandable information (97%); getting timely services (95%); enough time with staff (97%); being treated respectfully (98%); and HTC Factor Program/Pharmacy (340b) (96%). 95% - 97% were ‘always’ or ‘usually’ satisfied with core HTC team members. 91% of 12-17 year olds were ‘always’ or ‘usually’ satisfied with HTC encouragement regarding becoming more independent, and 92% with how the HTC discussed caring for a bleeding disorder upon reaching adulthood. Insurance and language were ‘always’ or ‘usually’ a problem for 14% and 9% respectively. 31% of respondents were female and 10% Hispanic. 80% were Caucasian, 5% African-American, 4% Asian/Pacific Islander or Native Hawaiian, 4% Multiple races, and 7% did not respond. Over 60% had severe or moderate FVIII or FIX deficiency or VWD Type 3. Ages ranged from newborns to over 90 years: 37% under 18, 18% age 18 – 34, and 45% over age 35.
Conclusions:
Implementing a National Patient Satisfaction Survey for the USHTCN remains feasible, is supported by HTCs nationally, and provides valuable information. Satisfaction with HTC services including 340B pharmacy is high. Insurance and language pose problems for 9-14%. Future analyses will examine additional national data and regional variation, and identify trends from the first national PSS conducted in 2014.