Problematic hospital experiences among adult patients with Sickle Cell Disease

Lakshmi Lattimer, Carlton Haywood, Sophie Lanzkron, Neda Ratanawongsa, Shawn M. Bediako, Mary Catherine Beach

Research output: Contribution to journalArticle


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.

Original languageEnglish (US)
Pages (from-to)1114-1123
Number of pages10
JournalJournal of Health Care for the Poor and Underserved
Issue number4
Publication statusPublished - Nov 2010



  • Acute care
  • Patient experience of care
  • Patient-provider relationships
  • Sickle cell disease

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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