Background/Aim:
Little data exist, especially for adolescents and young adults (AYAs), about the relationship between adherence to prescribed hemophilia treatment regimens and chronic pain (CP).
Methods:
A convenience sample of hemophiliacs aged 13-25 completed an IRB-approved, online survey addressing regimen-specific adherence and CP between April through December of 2012. Adherence was assessed for prophylactic (VERITAS-Pro) and on- demand (VERITAS-PRN) participants. VERITAS scores range from 24 (most adherent) to 120 (least adherent). CP was measured using the revised Faces Pain Scale (FPS-R). CP was dichotomized as high (‘moderate’ to ‘worst pain possible,’ i.e., ≥4) or low (‘mild’ or ‘no pain,’ (i.e., <4). Multivariable, parsimonious logistic regression models assessed factors associated with high vs low CP levels. Separate models were constructed to evaluate a combined VERITAS score among prophylactic and on-demand patients and the VERITAS- Pro score among prophylactic patients only. Small sample size precluded analysis of on- demand (only) participants.
Results:
Ninety-three AYAs participated. Mild patients (n=13) were excluded. Of the remaining 80 participants (79 male), 91% had severe disease, 86% infused prophylactically, and 91% had Hemophilia A. Fifty-one percent were aged 13-17, most were white (76%), non- Hispanic (88%), and never married (93%). The majority (94%) had some type of health insurance.
Mean VERITAS-Pro (n=69) and PRN (n=11) scores were 49.6 ±12.9 (range 25-78) and 51.0 ±11.6 (range 35-74), respectively. CP was reported as high for 35% of respondents (36% for prophylactic vs 27% for on-demand, p=.74). Mean VERITAS-Pro scores for those with high and low CP were 53.6 ±12.3 vs 47.4 ±12.9, p=.05. VERITAS-PRN scores were similar across CP status. Logistic regression analysis revealed that for each 10-point reduction (increase in adherence) in the combined VERITAS score (Pro and PRN) there was a 35% (OR=0.65; 95%CI=0.44, 0.96; p=.03) reduction in the odds of having high CP. Among prophylactic respondents: for each 10-point reduction in the VERITAS-Pro score there was a 39% (OR=0.61; 95%CI=0.39, 0.96; p=.03) reduction in the odds of having high CP and compared to whites, non-whites were 4.42 (95%CI: 1.21, 16.1; p=.02) times as likely to report high CP.
Objective:
To characterize the one-year bleeding pattern and assess the burden of bleeding among persons with hemophilia B, a subgroup of individuals with hemophilia that is frequently under-represented in population-based and health services surveillance.
Methods:
Hemophilia Utilization Group Study Part Vb (HUGS-Vb) collected prospective information about bleeding episodes, healthcare utilization, and burden of illness among persons with hemophilia B who obtained comprehensive care at one of ten hemophilia treatment centers in eleven geographically diverse states. Participants completed an initial interview and quarterly follow-up surveys. This analysis reports on baseline and one-year follow-up data from 93 participants. Wilcoxon-Mann-Whitney tests were used to determine the differences among subgroups. Spearman correlation coefficients (rho) were used to assess the relationship between bleeding episodes and utilization of health-related care.
Results:
Of the 93 participants, 50 (54%) were children. Forty-four (47%) participants (24 children) had severe hemophilia B, of whom 26 (59%) (16 children) reported using prophylactic therapy at initial interview. Fifty-eight (62%) participants reported having at least one bleeding episode within the one-year follow-up period. Mean number of bleeding episodes among participants with mild, moderate or severe hemophilia were 2.11±2.75, 3.47±6.25 and 6.53±7.66, respectively. Participants with severe hemophilia on prophylactic therapy had significantly (p=0.0203) fewer bleeding episodes (4.67±6.31), compared to those on episodic therapy (9.22±8.76). Significantly fewer outpatient visits (rho=0.2831, p=0.0060) and emergency room visits (rho=0.2810, p=0.0064) were reported among participants with fewer bleeding episodes. Mean absent days from work/school due to hemophilia among all participants was 2.24±4.58, and it was 0.98±2.16 days among parents of children under 18 years. Increased bleeding episodes were positively associated with increased days absent from work/school among both participants (rho=0.4598, p<0.0001) and parents of children (rho=0.3433, p=0.0147). Moreover, Positive relationship were found between increased bleeding episodes and increased time spent on the telephone with hemophilia centers (rho=0.5399, p<0.0001), pharmacists (rho=0.3373, p=0.0009) and employer/school personnel (rho=0.2230, p=0.0317).
Conclusions:
The HUGS Vb study documents the considerable burden of illness imposed by frequent bleeding episodes on persons with hemophilia B. These episodes increase patient and caregiver absenteeism from work/school, due to increased healthcare utilization and work/school coordination. As participants on prophylactic therapy have significantly fewer bleeding episodes than those on episodic therapy, prophylaxis should be encouraged among persons with hemophilia.
