Objective:
To assess quality of life, self-reported comorbidities, health-related quality of life (HRQoL), and impact of hemophilia on activities of young adult (YA) patients with hemophilia (PWH).
Methods:
Analysis of US YA-PWH respondents (aged 18-30) in the international HERO study conducted in 2010-2011. US respondents were recruited through NHF, Facebook, and e-mail. An independent ethics board approved the US survey.
Summary:
Of 189 adult PWH HERO respondents in the United States, 66 were aged 18-30 years, 74 were aged 31-40 years, and 49 were older than 40 years. The median (interquartile range) age of YA-PWH was 26 (22-28), and had hemophilia A (58%), hemophilia B (21%), or hemophilia with inhibitors (21%). Most were Caucasian (77%). Half were on prophylaxis (50%), with the remainder treated on-demand alone (24%) or with occasional short-term prophylaxis (24%). Compared with PWH older than 40 years, YA-PWH less frequently self- reported bone/skeletal/arthritis (41% vs 67%), chronic pain (38% vs 57%), and viral comorbidities (20% vs 65%). On EQ-5D-3L, 62% of YA-PWH reported no difficulties with mobility, 71% no difficulties with usual activities, and 94% no difficulties with self-care. In contrast, 68% reported moderate and 5% extreme pain/discomfort, and 33% reported some/moderate and 8% extreme anxiety/depression. On EQ-5D-VAS, 53% reported VAS scores of 80-90-100 (vs 24% for PWH >40 years). Surprisingly, 89% reported pain interference with daily activities in the past 4 weeks, with 9% reporting it was extreme/a lot. More YA-PWH had pain only with bleeding than PWH older than 40 (42% vs 18%), with 14% citing pain all the time and 39% reporting pain all the time and worse with bleeding. YA-PWH reported seeking psychological treatment in the prior 5 years (26%), frequently related to hemophilia (71%). When asked about specific activities, YA-PWH reported participating in lower-risk (80%), intermediate-risk (61%), and higher-risk activities (27%); older PWH reported 82%, 45%, and 16%, respectively.
Conclusions:
YA-PWH in the United States are less likely than older PWH to report arthritis, chronic pain, or viral diseases; yet, HERO results suggest these remain important problems for this age group. Pain appears to be perhaps the most significant; only 11% did not report pain interference in the past 4 weeks, and only 27% reported no pain/discomfort at the time of the survey. Additionally, 33% reported some/moderate depression. The relationship of intermediate- and high-risk activities to the rates of reported pain and arthritis is unclear.