title: Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia.
abstract: OBJECTIVE
  We explored racial differences in adherence to recommended clotting factor treatment regimens, chronic pain, and quality of life (QoL) among adolescents and young adults (AYAs) diagnosed with moderate or severe hemophilia.
  
  
  METHODS
  A convenience sample of hemophilia patients aged 13-25 years completed an online cross-sectional survey in 2012. Chronic pain was measured using the revised Faces Pain Scale (FPS-R) and dichotomized as high (FPS-R ≥ 4) or low (FPS-R < 4). QoL was measured with the SF-36.
  
  
  RESULTS
  Of 80 AYA participants (79 male), most had severe disease (91 %) and hemophilia A (91 %). Most were white (76 %) and non-Hispanic (88 %). At the univariate level, compared to whites, non-whites were more likely to have produced an inhibitor against clotting factor treatment (74 vs 38 %, p < .01), less likely to have commercial health insurance (16 vs 63 %, p < .001), more likely to report high levels of chronic pain (FPS-R ≥ 4) (63 vs 26 %, p < .01), and had lower SF-36 physical composite summary (PCS) scores. Adjusted logistic and quantile regression modeling, respectively, revealed that non-whites were 5.31 (95 % CI 1.62, 17.4; p < .01) times more likely to report high chronic pain and had median PCS scores that were 26.0 (95 % CI 11.0, 40.9; p < .01) points lower than whites.
  
  
  CONCLUSIONS
  Targeted efforts to prevent and manage chronic pain among non-white AYAs with moderate or severe hemophilia are necessary. After accounting for demographic and clinical differences, there were no racial differences in adherence to recommended clotting factor treatment regimens; however, non-whites were more than five times more likely to report high levels of chronic pain, which predicted worse overall physical QoL, bodily pain, physical and social functioning, and greater role limitations due to physical health.
authors.affiliation: US Medical Affairs, Pfizer Inc, New York, NY, USA. mclaugj1@gmail.com.
authors.forename: John M
authors.initials: JM
authors.lastname: McLaughlin
authors.affiliation: Henry Ford Adult Hemophilia & Thrombosis Treatment Center, Detroit, MI, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Lambing
authors.affiliation: Northern Regional Bleeding Disorders Center, Traverse City, MI, USA.
authors.forename: Michelle L
authors.initials: ML
authors.lastname: Witkop
authors.affiliation: US Medical Affairs, Pfizer Inc, New York, NY, USA.
authors.forename: Terry L
authors.initials: TL
authors.lastname: Anderson
authors.affiliation: University of Michigan Hemophilia Treatment Center, Ann Arbor, MI, USA.
authors.forename: James
authors.initials: J
authors.lastname: Munn
authors.affiliation: US Medical Affairs, Pfizer Inc, New York, NY, USA.
authors.forename: Bartholomew
authors.initials: B
authors.lastname: Tortella
mesh_terms: D000293:Adolescent; D000328:Adult; D001779:Blood Coagulation Factors / Q000627:therapeutic use; D059350:Chronic Pain / Q000208:ethnology*; D003430:Cross-Sectional Studies; D005260:Female; D054624:Health Status Disparities; D006467:Hemophilia A / Q000188:drug therapy / Q000208:ethnology*; D006630:Hispanic or Latino / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D055118:Medication Adherence / Q000208:ethnology; D010147:Pain Measurement; D011788:Quality of Life; D044469:Racial Groups / Q000706:statistics & numerical data*; D012720:Severity of Illness Index; D044465:White People / Q000706:statistics & numerical data; D055815:Young Adult
chemical_list: D001779:Blood Coagulation Factors
keywords: Adherence; Clotting factor; Hemophilia; Pain; Quality of life; Race; Racial disparity