OBJECTIVE: Health-related quality of life (HRQL) of hemophilia patients with inhibitors has not been well documented in the United States. This study aimed to measure the HRQL of hemophilia patients with inhibitors and compare findings with the HRQL of the U.S. general population.
METHODS: Hemophilia patients with inhibitors (N = 90) who had participated in a patient forum were mailed a survey which included the SF-12, a validated generic HRQL instrument. Data were analyzed using the standard SF-12 algorithms. Scores were assessed for each of the eight HRQL domains and the two component summary scores Physical (PCS) and Mental (MCS). These were compared to those of the general population.
RESULTS: Respondents (n = 45, response rate = 50%) were predominantly male (96.1%), and mean age was 20.7 years (SD = 18.8). The majority is hemophilia type A (88.5%) and consider their disease “serious.” Mean PCS of respondents was significantly worse (i.e., lower) than that of the general U.S. public (39.9 vs. 49.6: p < 0.01). Four domain scores were significantly lower among respondents compared to the general U.S. public: physical functioning, role physical, bodily pain and social functioning (p < 0.01). Mean MCS was comparable, 49.9 vs. 49.6 (p = 0.72).
CONCLUSION: These findings confirm results previously shown in Europe (Gringeri et al 2005), that hemophilia patients with inhibitors have a severely impaired physical HRQL, but maintain a normal mental score compared with the general population in the United States.
