title: Distress in patients with bleeding disorders: a single institutional cross-sectional study.
abstract: BACKGROUND
  Distress may affect a patient's ability to cope with and manage disease.
  
  
  OBJECTIVE
  To report distress prevalence in adult patients with bleeding disorders and determine whether specific clinical and health characteristics, including disease severity and employment status, are associated with distress.
  
  
  METHODS
  Patients who visited a Haemophilia Treatment Centre (HTC) between January 1st, 2012 through February 28th, 2014 and who completed a distress screen, pain screen and questionnaire were evaluated cross sectionally. Distress was measured by the National Comprehensive Cancer Network Distress Management Tool, which allowed patients to rate recent distress on a 0-10 point scale. A rating of five or more was categorized as high distress. Pain was measured by the Brief Pain Inventory Short Form, which asked patients to rate pain types on 0-10 point scales. Patients reported employment and other demographic and behavioural information on the questionnaire. Primary diagnosis, age, HIV and HCV status were abstracted from medical records. Adjusted logistic regression was used to identify distress associations.
  
  
  RESULTS
  High distress prevalence among 152 patients with bleeding disorders was 31.6%. Unemployment, disability, greater depressive symptoms and higher pain were associated with high distress in multivariable models. Bleeding disorder diagnosis, race/ethnicity, HIV/HCV status and on-demand treatment regimen were not associated with high distress.
  
  
  CONCLUSIONS
  Distress among patients with congenital bleeding disorders followed at a comprehensive HTC was high and similar to that reported among patients with cancer. Future research should determine whether distress impacts clinical outcomes in patients with bleeding disorders as demonstrated in other chronic disorders.
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: V
authors.initials: V
authors.lastname: Barry
authors.affiliation: Department of Psychiatry and Behavioral Services, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: M E
authors.initials: ME
authors.lastname: Lynch
authors.affiliation: Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: D Q
authors.initials: DQ
authors.lastname: Tran
authors.affiliation: Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: A
authors.initials: A
authors.lastname: Antun
authors.affiliation: Winship Cancer Institute of Emory University, Atlanta, Georgia, USA.
authors.forename: H G
authors.initials: HG
authors.lastname: Cohen
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: A
authors.initials: A
authors.lastname: DeBalsi
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: D
authors.initials: D
authors.lastname: Hicks
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: S
authors.initials: S
authors.lastname: Mattis
authors.affiliation: Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: M J A
authors.initials: MJ
authors.lastname: Ribeiro
authors.affiliation: Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: S F
authors.initials: SF
authors.lastname: Stein
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: C L
authors.initials: CL
authors.lastname: Truss
authors.affiliation: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
authors.forename: K
authors.initials: K
authors.lastname: Tyson
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, USA.|Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA.|Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia, USA.
authors.forename: C L
authors.initials: CL
authors.lastname: Kempton
mesh_terms: D000328:Adult; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D003863:Depression / Q000453:epidemiology / Q000209:etiology*; D005260:Female; D006470:Hemorrhage / Q000523:psychology*; D006801:Humans; D008297:Male; D011788:Quality of Life
keywords: United States; depression; distress; haemophilia; pain; quality of life