The purpose of this career development award is to support Dr. Carlton Haywood Jr. in establishing a research program that seeks to improve the well-being of patients with sickle cell disease (SCD) by improving the quality of health care delivered to this population of patients. This award will facilitate Dr. Haywood's acquisition of additional skills and competencies in the areas of health services research, longitudinal designs, and qualitative research methods that are necessary for accomplishing his career goals. Moreover, the award will allow Dr. Haywood to receive mentoring from leading researchers with a strong track record of mentoring research scientists. The Johns Hopkins University offers an ideal environment for the proposed work, particularly be- cause of its strong Schools of Medicine and Public Health, two comprehensive sickle cell centers, and cadre of established researchers in bioethics, health services research, clinical research, and pain research with strong interests in sickle cell disease. The relationship between SCD patients and the clinicians who care for them is in many instances marred by a "crisis of trust", particularly in regards to the issue of pain management. Many clinicians lack trust in SCD patients'reports of the presence or intensity of pain. Many patients lack trust in the desire of clinicians to promote the patient's best interest. Trust is recognized as an essential component of the patient-clinician relationship, and high levels of patient trust in physicians are associated with positive clinical outcomes. While the lack of trust between SCD patients and their clinicians is well established, the determinants of this lack of trust are not well-understood, nor has its clinical impact been well-described. This gap in knowledge impedes our ability to develop and test behavioral interventions to improve the quality of SCD care. Dr. Haywood's long-term research goal is to understand the ways in which SCD patient and clinician attitudes and behaviors impact health outcomes for the SCD population. The overall research objective of this proposal is to identify factors that influence one important attitude, trust, and to determine the role that trust serves in the realization of health outcomes for SCD patients. The rationale for the proposed research is that a greater understanding of the determinants and outcomes of trust in SCD care will lead to the development of effective clinician and patient behavioral interventions to improve outcomes for this patient population. We will pursue 3 specific aims to accomplish the overall study objectives. We will: 1) Evaluate the determinants of patient trust over time, and assess the impact of longitudinal changes in trust on patient-reported and clinical out- comes;2) Determine the impact of clinician trust on the outcomes of acute healthcare encounters;and 3) Assess the impact of one specific approach to the provision of pain management (the use of opioid agreements) on SCD patient perceptions of clinician trust. This research is expected to lead to a better understanding of the complex attitudinal and behavioral forces that influence trust and patient outcomes within the SCD patient-clinician relationship, thus guiding the development of behavioral interventions to improve SCD outcomes.

Public Health Relevance

A lack of trust between a patient and clinician may significantly limit the effectiveness of the relationship in achieving positive health outcomes for the patient. The relationship between sickle cell patients and their clinicians is often marred by a crisis of trust, yet the determinants and outcomes of this lack of trust for the health of sickle cell patients is not well understood. This project can inform behavioral interventions to improve outcomes for sickle cell patients by illuminating the determinants and outcomes of sickle cell patient trust, and assessing the impact of clinician mistrust on the quality of acute sickle cell healthcare encounters.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Research Scientist Development Award - Research & Training (K01)
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Special Emphasis Panel (ZHL1-CSR-Y (M1))
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Werner, Ellen
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Johns Hopkins University
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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
Naik, R P; Streiff, M B; Haywood Jr, C et al. (2014) Venous thromboembolism incidence in the Cooperative Study of Sickle Cell Disease. J Thromb Haemost 12:2010-6
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
Laurence, B; Haywood Jr, C; Lanzkron, S (2013) Dental infections increase the likelihood of hospital admissions among adult patients with sickle cell disease. Community Dent Health 30:168-72
Naik, Rakhi P; Streiff, Michael B; Haywood Jr, Carlton et al. (2013) Venous thromboembolism in adults with sickle cell disease: a serious and under-recognized complication. Am J Med 126:443-9
Haywood Jr, Carlton (2013) Disrespectful care in the treatment of sickle cell disease requires more than ethics consultation. Am J Bioeth 13:12-4
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
Glassberg, Jeffrey A; Tanabe, Paula; Chow, Annie et al. (2013) Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med 62:293-302.e10