Patient-centered care and trust in the medical profession among adults with sickle cell disease

Background. Sickle cell disease (SCD) is a serious genetic condition which can cause significant morbidity, frequent hospital utilization, and early mortality. SCD patients frequently report low quality interpersonal healthcare experiences. Nevertheless, there is a dearth of research examining the impact of these experiences on outcomes for this population. This dissertation examines the impact of low quality interpersonal healthcare experiences on two selected outcomes, and it illuminates the moral implications and moral urgency of these experiences for persons with the disease.;Methods. This dissertation consists of: (1) a systematic review of the literature on barriers to appropriate therapies for SCD; (2) a cross-sectional survey study examining the association of previous interpersonal healthcare experiences on trust toward the medical profession among a sample of adults with SCD; and (3) an ethical analysis of the problem of low quality interpersonal healthcare experiences for SCD patients.;Results. There is a high degree of evidence that negative medical provider attitudes toward persons with SCD serve as a barrier to the receipt of appropriate pain management. SCD patient ratings of the quality of previous interpersonal healthcare experiences are significantly associated with SCD patient trust toward the medical profession even after controlling for a number of potentially confounding patient characteristics. The values of patient-centered health care may be derived directly from general moral obligations of respect for persons, thus making the patient-centeredness of the healthcare system a direct concern of social justice, and giving a special moral urgency to the problem of low quality interpersonal healthcare experienced by persons with SCD.;Conclusions. The lack of patient-centered care experienced by persons with SCD has a significant impact on outcomes for this population, and ought to be the subject of great moral scrutiny in a society committed to social justice. Efforts to improve the quality of SCD care ought to target the quality of the relationships among SCD patients and the providers who deliver their care.