Sickle cell disease (SCD) is one of the most common inherited diseases in the United States. Vasocclusion, resulting in acute, debilitating pain, is the hallmark of SCD and the most common reason for hospitalization beyond infancy. In part due to SCD patients'need for narcotic medications during painful crises, and providers'reluctance to prescribe them, patients are often viewed as drug addicts and have adversarial relationships lacking in trust and respect with health professionals. Adversarial relationships may be magnified perhaps because SCD patients are typically racial/ethnic minorities;trust and respect have been shown to occur less in minority patient-physician interactions. A better understanding is needed of the complex behavioral and attitudinal forces present in interactions between SCD patients and their providers and their effect on patient outcomes.
Our aims are 1) to evaluate the experiences of respect, trust, communication, adherence to therapy, appropriateness of care, and health outcomes for SCD patients in routine care environments, and 2) to evaluate the acute care experiences of respect, pain management quality, and health outcomes for SCD patients with painful crisis in the Emergency Department and inpatient setting. We will conduct a prospective cohort study of 350 SCD patients. Patients will be eligible if they are age 16 or older, have a sickle hemoglobinopathy and are willing to give informed consent. We will measure experience of respect, trust, clinical characteristics, pain related attitudes and behaviors, social and behavioral characteristics, patient- provider communication, patient adherence, appropriateness of care and patient outcomes. We will also study more intensively the experience of SCD patients with painful crises (and a control group of asthma patients) who visit the Emergency Department or are hospitalized, also measuring respect experienced by patients, quality of their care (including pain management for SCD), pain resolution and health care utilization. By establishing the fundamental relations between patient experience of respect, trust, healthcare processes, and patient outcomes we hope to generate important information regarding targets for interventions to reduce morbidity and improve the health status of vulnerable SCD patients. On a wider scale, the research may provide insight into how behavioral factors, in conjunction with pathophysiology and medical advances, impact health for other chronic diseases affecting ethnic and racial minorities. Sickle cell disease--characterized by unpredictable episodes of debilitating pain and shortened life expectancy--is one of the most common inherited diseases in the United States and primarily affects African Americans. Because patients with sickle cell disease have reported treatment with disrespect and poor quality healthcare, our study aims systematically to assess SCD patients'experiences of respect, their trust in healthcare providers and the health system, the quality of healthcare they receive, and their overall health outcomes in both routine and acute care settings.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Research Project (R01)
Project #
5R01HL088511-05
Application #
8600716
Study Section
Behavioral Medicine, Interventions and Outcomes Study Section (BMIO)
Program Officer
Werner, Ellen
Project Start
2009-07-06
Project End
2014-12-31
Budget Start
2014-01-01
Budget End
2014-12-31
Support Year
5
Fiscal Year
2014
Total Cost
$747,443
Indirect Cost
$230,450
Name
Johns Hopkins University
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218
Haywood Jr, Carlton; Diener-West, Marie; Strouse, John et al. (2014) Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage 48:934-43
Haywood Jr, Carlton; Lanzkron, Sophie; Diener-West, Marie et al. (2014) Attitudes toward clinical trials among patients with sickle cell disease. Clin Trials 11:275-283
Haywood Jr, Carlton; Bediako, Shawn; Lanzkron, Sophie et al. (2014) An unequal burden: poor patient-provider communication and sickle cell disease. Patient Educ Couns 96:159-64
Haywood Jr, Carlton; Tanabe, Paula; Naik, Rakhi et al. (2013) The impact of race and disease on sickle cell patient wait times in the emergency department. Am J Emerg Med 31:651-6
Gudzune, Kimberly A; Huizinga, Mary Margaret; Beach, Mary Catherine et al. (2012) Obese patients overestimate physicians' attitudes of respect. Patient Educ Couns 88:23-8
Haywood Jr, Carlton; Beach, Mary Catherine; Bediako, Shawn et al. (2011) Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease. Am J Hematol 86:85-7
Bediako, Shawn M; Lattimer, Lakshmi; Haywood Jr, Carlton et al. (2011) Religious coping and hospital admissions among adults with sickle cell disease. J Behav Med 34:120-7
Elander, James; Beach, Mary Catherine; Haywood Jr, Carlton (2011) Respect, trust, and the management of sickle cell disease pain in hospital: comparative analysis of concern-raising behaviors, preliminary model, and agenda for international collaborative research to inform practice. Ethn Health 16:405-21