Patient-reported outcomes and joint status across subgroups of US adults with hemophilia with varying characteristics: Results from the Pain, Functional Impairment, and Quality of Life (P-FiQ) study

Eur J Haematol. 2018 Apr:100 Suppl 1:14-24. doi: 10.1111/ejh.13028.

Abstract

Introduction: Pain and functional impairment associated with joint disease are major problems for people with hemophilia, and impact on health-related quality of life (HRQoL) may vary across groups defined by demographic and treatment-related characteristics.

Objective: To evaluate differences in overall HRQoL, pain, function, and joint status between P-FiQ study subgroups.

Methods: Adult males with hemophilia and a history of joint pain/bleeding completed a pain history and the patient-reported outcome instruments EQ-5D-5L, Brief Pain Inventory v2 Short Form (BPI), International Physical Activity Questionnaire (IPAQ), and Hemophilia Activities List (HAL); optionally, joint status was assessed (Hemophilia Joint Health Score v2.1 [HJHS]). Scores were analyzed between subgroups across sets of participant characteristics.

Results: A total of 381 adult males with hemophilia were enrolled, with median age of 34 years. Worse scores on EQ-5D-5L index, BPI pain severity/interference, HAL overall score, and HJHS were generally associated with being college educated, unemployment, self-reporting both acute and chronic pain, and self-reporting anxiety/depression.

Conclusions: Measures of joint status and HRQoL were consistently lower in participants who had higher educational levels, were unemployed, self-reported having both acute and chronic pain, and self-reported having anxiety/depression. A greater understanding of the association of these factors with disease outcomes may improve individualized patient management.

Keywords: coagulation disorders; quality of life.

MeSH terms

  • Adult
  • Anxiety
  • Comorbidity
  • Cross-Sectional Studies
  • Depression
  • Hemophilia A / complications*
  • Hemophilia A / epidemiology*
  • Hemophilia A / psychology
  • Hemophilia A / therapy
  • Hemophilia B / complications
  • Hemophilia B / epidemiology
  • Hemophilia B / psychology
  • Humans
  • Joint Diseases / epidemiology*
  • Joint Diseases / etiology*
  • Joint Diseases / physiopathology
  • Joint Diseases / prevention & control
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures
  • Quality of Life
  • Risk Factors
  • United States / epidemiology
  • Young Adult