title: Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.
abstract: BACKGROUND
  Perceived discriminatory experiences in society have been associated with a higher burden of pain among some minority patient populations.
  
  
  OBJECTIVE
  To describe the extent to which patients with sickle cell disease (SCD) perceive discrimination from health care providers and to examine the association of these experiences with the burden of chronic SCD pain.
  
  
  METHODS
  Cross-sectional analysis of data collected at baseline of a prospective cohort study of SCD patient experiences of care (n = 291). Perceived race-based and disease-based discrimination from health care providers were measured using subscales adapted from the Interpersonal Processes of Care Survey. Discrimination scores were examined for their association with patient characteristics and measures of pain burden using descriptive, bivariate, and multivariate analytic techniques.
  
  
  RESULTS
  Respondents reported a greater burden of race-based discrimination from health care providers than has been previously reported by African Americans, and they reported a greater amount of disease-based vs. race-based discrimination. Age and having difficulty persuading providers about pain were the only patient characteristics independently associated with race-based discrimination, whereas older age, greater emergency room utilization, having difficulty persuading providers about pain, daily chronic pain, fewer good days during a week, and a higher severity of pain on their good days were independently associated with greater disease-based discrimination.
  
  
  CONCLUSIONS
  Perceived disease-based, but not race-based, discrimination was found to be associated with a greater range of self-reported pain among patients with SCD. If causal, this finding could signal an important new approach to mitigating the burden of pain experienced by persons with SCD.
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA. Electronic address: chaywoodjr@jhu.edu.
authors.forename: Carlton
authors.initials: C
authors.lastname: Haywood
authors.affiliation: The Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
authors.forename: Marie
authors.initials: M
authors.lastname: Diener-West
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
authors.forename: John
authors.initials: J
authors.lastname: Strouse
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
authors.forename: C Patrick
authors.initials: CP
authors.lastname: Carroll
authors.affiliation: The University of Maryland, Baltimore County, Baltimore, Maryland, USA.
authors.forename: Shawn
authors.initials: S
authors.lastname: Bediako
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
authors.forename: Sophie
authors.initials: S
authors.lastname: Lanzkron
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Haythornthwaite
authors.affiliation: The Howard University Hospital, Washington, DC, USA.
authors.forename: Gladys
authors.initials: G
authors.lastname: Onojobi
authors.affiliation: The Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
authors.forename: Mary Catherine
authors.initials: MC
authors.lastname: Beach
mesh_terms: D000328:Adult; D001741:Black or African American / Q000523:psychology; D000755:Anemia, Sickle Cell / Q000208:ethnology / Q000503:physiopathology / Q000523:psychology*; D059350:Chronic Pain / Q000208:ethnology / Q000503:physiopathology / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D015999:Multivariate Analysis; D010465:Perception; D011287:Prejudice / Q000523:psychology*; D011369:Professional-Patient Relations; D011446:Prospective Studies; D063505:Racism; D057566:Self Report; D011795:Surveys and Questionnaires
keywords: Discrimination; chronic pain; health care quality; patient-provider communication; sickle cell disease
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