title: Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study.
abstract: BACKGROUND
  Severe hemophilia and subsequent hemophilic arthropathy result in joint pain and impaired health-related quality of life (HRQoL). Assessment of HRQoL in persons with hemophilia (PWH), including underlying factors that drive HRQoL differences, is important in determining health care resource allocation and in making individualized clinical decisions.
  
  
  OBJECTIVE
  To examine potential associations between HRQoL, pain interference, and self-reported arthritis and age, employment, activity, bleed frequency, and hemophilia treatment center and health care professional utilization.
  
  
  METHODS
  PWH (age ≥18 years) from ten countries completed a 5-point Likert scale on pain interference over the previous 4 weeks, the EQ-5D-3L scale (mobility, usual activities, self-care, pain/discomfort, anxiety/depression) including a health-related visual analog scale (0-100, coded as an 11-point categorical response).
  
  
  RESULTS
  Pain interference (extreme/a lot) was higher in PWH aged >40 years (31%) compared to those aged 31-40 years (27%) or ≤30 years (21%). In an analysis of eight countries with home treatment, PWH who reported EQ-5D mobility issues were less likely to be employed (53% vs 79%, with no mobility issues). Median annual bleed frequency increased with worsening EQ-5D pain or discomfort. The percentage of PWH with inhibitors reporting visual analog scale scores of 80-90-100 was lower (20%) than those without inhibitors (34%). Median bleed frequency increased with pain. Globally, nurse and social worker involvement increased with disability and pain; physiotherapist utilization was moderate regardless of the extent of disability or pain.
  
  
  CONCLUSIONS
  Increased disability and pain were associated with increased age, lower employment, higher reported bleed frequency, and lower HRQoL.
authors.affiliation: BioRx, Cincinnati, OH, USA.
authors.forename: Angela L
authors.initials: AL
authors.lastname: Forsyth
authors.affiliation: Munson Medical Center, Traverse City, MI, USA.
authors.forename: Michelle
authors.initials: M
authors.lastname: Witkop
authors.affiliation: Henry Ford Hospital, Detroit, MI, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Lambing
authors.affiliation: Asociacion Venezolana para la Hemofilia, Caracas, Venezuela.
authors.forename: Cesar
authors.initials: C
authors.lastname: Garrido
authors.affiliation: Center for Inherited Blood Disorders, Orange, CA, USA.
authors.forename: Spencer
authors.initials: S
authors.lastname: Dunn
authors.affiliation: Novo Nordisk Inc., Plainsboro, NJ, USA.
authors.forename: David L
authors.initials: DL
authors.lastname: Cooper
authors.affiliation: Children's Hospital of Orange County, Center for Inherited Blood Disorders, Orange, CA, USA.
authors.forename: Diane J
authors.initials: DJ
authors.lastname: Nugent
keywords: HERO; hemophilia; pain; quality of life