By Carlton Haywood Jr., PhD, MA


As an individual growing up with sickle cell disease (SCD), a severe, life-threatening genetic disorder of the blood that can cause frequent hospital stays and encounters with healthcare providers, I learned at an early age just how important the concepts of respect and trust are for patient-provider relationships.


As a patient seeking care, I want my providers to solicit and acknowledge my own individual experiences with my disease, I want my reports of my symptoms and how I feel to be believed, and I want to have a say in creating my treatment plan.


As a child, I didn’t recognize that it was respect and trust per se that I was seeking from my relationships with healthcare providers.  It wasn’t until I began to study bioethics that I gained access to that helpful language to characterize what I desired in my healthcare encounters.


Nevertheless, what I could clearly discern, even as a child, was the difference in how I was made to feel…about myself….about healthcare providers generally…or about the treatments recommended for me…depending on the extent to which my healthcare encounters reflected the type of relationships I wanted with my healthcare providers.


Those encounters that could be characterized as respectful and trusting left me feeling positively about myself and about healthcare providers as a group, and they left me willing and energized to follow the treatment plan.  Those encounters that were not respectful or trusting left me feeling discouraged and annoyed (at best), or downright angry and spiteful at their worst.


While all groups of patients have the same basic desires for good relationships with providers, we know that persons with SCD as a whole tend to report more encounters with healthcare providers that are lacking in sufficient respect and trust. As a bioethics researcher, my central professional interest is in eliminating these insufficiencies.


My work as a member of the Improving Patient Outcomes with Respect and Trust (IMPORT) study facilitates the pursuit of my professional goals. Funded by the National Heart, Lung, and Blood Institute of the NIH, the IMPORT study is designed to understand those factors affecting SCD patient experiences in seeking health care, and to identify the clinical and psychosocial implications of these experiences.


To accomplish these goals, we are following approximately 300 persons with SCD seeking care at two urban academic medical centers in the mid-Atlantic region of the U.S.


A number of important findings have already begun to flow from our research efforts. We have learned that SCD patients tend to report more problems communicating with healthcare providers than African-American patients overall, suggesting that disease-specific factors, and not the predominantly African-American race of SCD patients, play a greater role in influencing SCD patient-provider relationships.1


Further, we have learned that SCD patients who perceive a greater level of discrimination from healthcare providers on the basis of their disease status, and not their race or ethnicity, report a greater burden of chronic pain, suggesting that improving the SCD patient-provider relationship could play a direct role in reducing the impact of the most common complication of SCD, that being the severe acute and chronic pain that it causes.2


We are learning that SCD patients who perceive greater amounts of stigma from both external and internal sources have greater levels of acute healthcare utilization, and perceive the severity of their disease to be worse than others with SCD, which suggests that efforts to reduce the perception of stigma may have clinical benefits in addition to psychosocial benefits.3


Finally, we have learned that SCD patients tend to have very positive attitudes and beliefs about the benefits of participating in clinical trials, which may serve to debunk a widely held belief that SCD patients possess a general unwillingness to participate in research studies.4


As the IMPORT study continues, we hope to accumulate more knowledge that will be used to develop interventions that ensure that SCD patients enjoy the same level of respect and trust in their healthcare encounters that is due to all persons.


carlton_haywood_jrCarlton Haywood Jr., PhD, MA is a core faculty member at the Johns Hopkins Berman Institute of Bioethics, associate faculty at the Welch Center for Prevention, Epidemiology, and Clinical Research, and an assistant professor in the Division of Hematology at the Johns Hopkins School of Medicine




References


1. An Unequal Burden: Poor Patient-Provider Communication and Sickle Cell Disease.

Haywood Jr. C, Bediako S, Lanzkron S, Diener-West M, Strouse J, Haythornthwaite J, Onojobi G, and Beach MC, for the IMPORT Investigators. Patient Education and Counseling [in press]. Accepted – May 2014


2. Perceived Discrimination in Health Care is Associated with a Greater Burden of Pain in Sickle Cell Disease.

Haywood C Jr, Diener-West M, Strouse J, Carroll CP, Bediako S, Lanzkron S, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators.

J Pain Symptom Manage. 2014 Apr 14. [Epub ahead of print]


3. The measure of sickle cell stigma (MoSCS): Initial findings from the IMPORT study.

Bediako, S., Lanzkron, S., Diener-West, M. Onojobi, G., Beach, M. C., and Haywood Jr., C. for the IMPORT Investigators. Journal of Health Psychology. (in press). Accepted – May 2014


4. Attitudes toward clinical trials among patients with sickle cell disease.

Haywood C Jr, Lanzkron S, Diener-West M, Haythornthwaite J, Strouse JJ, Bediako S, Onojobi G, Beach MC; for the IMPORT Investigators.

Clin Trials. 2014 Feb 13. [Epub ahead of print]

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