Problematic Hospital Experiences Among Adult Patients With Sickle Cell Disease
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Lattimer, Lakshmi, Carlton Haywood, Jr., Sophie Lanzkron, Neda Ratanawongsa, Shawn M. Bediako, and Mary Catherine Beach. "Problematic Hospital Experiences among Adult Patients with Sickle Cell Disease." Journal of Health Care for the Poor and Underserved 21, no. 4 (2010): 1114-1123. doi:10.1353/hpu.2010.0940.
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© Johns Hopkins University Press 2011
© Johns Hopkins University Press 2011
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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.