title: Problematic hospital experiences among adult patients with sickle cell disease.
abstract: BACKGROUND
  Adults with sickle cell disease (SCD) have often reported difficulties obtaining care during vaso-occlusive crisis (VOC) in qualitative studies.
  
  
  METHODS
  We measured the experiences of 45 SCD patients who received in-hospital care for VOC using the Picker Patient Experience Questionnaire (PPE-15), and used the one sample binomial test to compare with national norms.
  
  
  RESULTS
  Most SCD patients reported that they were insufficiently involved in decisions (86%), staff gave conflicting information (64%), it wasn't easy to find someone to discuss concerns (61%), doctors' answers to questions were not clear (58%), nurses' answers to questions were not clear (56%), doctors did not always discuss fears and anxieties (53%), and nurses did not always discuss fears and anxieties (52%). A greater percentage of SCD patients than the U.S. sample in 9 of 12 areas reported problems.
  
  
  CONCLUSIONS
  Further research is needed to determine the consequences of and potential interventions to improve these poor experiences.
authors.affiliation: Osler Medical Training Program, Johns Hopkins Hospital.
authors.forename: Lakshmi
authors.initials: L
authors.lastname: Lattimer
authors.forename: Carlton
authors.initials: C
authors.lastname: Haywood
authors.forename: Sophie
authors.initials: S
authors.lastname: Lanzkron
authors.forename: Neda
authors.initials: N
authors.lastname: Ratanawongsa
authors.forename: Shawn M
authors.initials: SM
authors.lastname: Bediako
authors.forename: Mary Catherine
authors.initials: MC
authors.lastname: Beach
mesh_terms: D000046:Academic Medical Centers / Q000458:organization & administration*; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology / Q000628:therapy*; D015331:Cohort Studies; D003142:Communication; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008505:Medical Staff, Hospital; D008875:Middle Aged; D009723:Nurse-Patient Relations; D009741:Nursing Staff, Hospital; D010358:Patient Participation / Q000706:statistics & numerical data; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult