title: "I'm talking about pain": sickle cell disease patients with extremely high hospital use.
abstract: BACKGROUND
  A small minority of sickle cell disease patients accounts for the majority of inpatient hospital days. Admitted as often as several times a month, over successive years, this cohort of patients has not been studied in depth despite their disproportionate contribution to inpatient hospital costs in sickle cell disease.
  
  
  OBJECTIVE
  To characterize the subjective experience of extremely high hospital use in patients with sickle cell disease, and generate hypotheses about the antecedents and consequences of this phenomenon.
  
  
  METHODS
  Qualitative study involving in-depth, open-ended interviews using a standardized interview guide.
  
  
  METHODS
  A single urban academic medical center.
  
  
  METHODS
  Eight individuals, of varying age and gender, identified as the sickle cell disease patients who are among the highest hospital use patients over a 3-year period.
  
  
  RESULTS
  A common narrative emerged from the interview transcripts. Participants were exposed to the hospital environment and intravenous (IV) opioids at a young age, and this exposure was associated with extremely high hospital use in adulthood, evident in descriptions of multiple dimensions of their lives: pain and opioid medication use, interpersonal relationships, and personal development.
  
  
  CONCLUSIONS
  Our results suggest a systematic, self-reinforcing process of isolation from mainstream society, support structures, and caregivers, based on increasing hospitalization, growing dependency on opioid medications, as well as missed developmental milestones. Further study and interventions should be geared towards breaking this spiraling cycle with long-term strategies in disease management and social integration.
authors.affiliation: Department of Psychiatry, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Daniel
authors.initials: D
authors.lastname: Weisberg
authors.forename: Gabriela
authors.initials: G
authors.lastname: Balf-Soran
authors.forename: William
authors.initials: W
authors.lastname: Becker
authors.forename: Shan-Estelle
authors.initials: SE
authors.lastname: Brown
authors.forename: William
authors.initials: W
authors.lastname: Sledge
mesh_terms: D000046:Academic Medical Centers / Q000706:statistics & numerical data; D061605:Administration, Intravenous; D000328:Adult; D000701:Analgesics, Opioid / Q000008:administration & dosage* / Q000627:therapeutic use; D000755:Anemia, Sickle Cell / Q000150:complications* / Q000188:drug therapy / Q000523:psychology; D003237:Connecticut; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010146:Pain / Q000188:drug therapy* / Q000209:etiology / Q000523:psychology; D010343:Patient Admission / Q000191:economics / Q000706:statistics & numerical data*; D011369:Professional-Patient Relations; D036301:Qualitative Research; D055815:Young Adult
chemical_list: D000701:Analgesics, Opioid