Management of Sickle Cell Disease Super Utilizers

Johnson, Gary A.

doi:10.5811/westjem.2016.12.33224

Cited by 2 publications

(2 citation statements)

References 8 publications

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“…However, most studies on ED use tend to report on overall utilization in the SCD population with a focus on superutilizers and ED visit reduction approaches. 4,5,7,11,19,[28][29][30][31][32][33][34][35] Similar to some of these studies, our study also found that the majority of participants were not high ED utilizers. 11 However, the stigma and pervasive negative ED experiences have been empirically noted across our study and several others.…”

Section: Discussionsupporting

confidence: 89%

Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors

Abdallah

Buscetta

Cooper

et al. 2020

Annals of Emergency Medicine

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Individuals living with sickle cell disease (SCD) often require urgent care; however, some patients hesitate to present to the emergency department (ED), which may increase the risk of serious clinical complications. Our study aims to examine psychosocial, clinical, and demographic factors associated with delaying ED care. Methods: This was a cross-sectional study of 267 adults with SCD from the national INSIGHTS Study. The binary outcome variable asked whether, in the past 12 months, participants had delayed going to an ED when they thought they needed care. Logistic regression was performed with clinical, demographic, and psychosocial measures. Results: Approximately 67% of the participants reported delaying ED care. Individuals who delayed care were more likely to have reported higher stigma experiences (odds ratio [OR]¼1.09; 95% confidence interval [CI] 1.03 to 1.16), more frequent pain episodes (OR¼1.15; 95% CI 1.01 to 1.32), lower health care satisfaction (OR¼ 0.74; 95% CI 0.59 to 0.94), and more frequent ED visits (OR¼6.07; 95% CI 1.18 to 31.19). Disease severity and demographics, including sex, age, and health insurance status, were not significantly associated with delay in care. Conclusion: Psychosocial factors, including disease stigma and previous negative health care experiences, are associated with delay of ED care in this SCD cohort. There is a need to further investigate the influence of psychosocial factors on the health careseeking behaviors of SCD patients, as well as the downstream consequences of these behaviors on morbidity and mortality. The resulting knowledge can contribute to efforts to improve health care experiences and patient-provider relationships in the SCD community. [

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Section: Discussionsupporting

confidence: 89%

Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors

Abdallah

Buscetta

Cooper

et al. 2020

Annals of Emergency Medicine

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“…23 Th ese individuals have a signifi cantly shorter lifespan and higher morbidity (e.g., acute life-threatening diseases such as acute chest syndrome and stroke) compared with other adults. 24,25 Most families aff ected by SCD have no systematic way to engage in or lend their expertise to health research that could bring barriers to care to the forefront. Th is suggests an urgent need to engage individuals with SCD to address this void in health-related research.…”

mentioning

confidence: 99%

Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

Mayo-Gamble¹,

Murry²,

Cunningham-Erves³

et al. 2020

Journal of Health Care for the Poor and Underserved

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Developing innovative strategies to engage patients as research partners is a priority in eff orts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identifi ed areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. Th is community-based training model, which places CHAs as liaisons between researchers and * We dedicate this article to the memory of Dr. Trevor K. Th ompson, sickle cell warrior and champion for the sickle cell community. Without his devotion and eff orts to support sickle cell consumers, this work would not have been possible.

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Management of Sickle Cell Disease Super Utilizers

Cited by 2 publications

References 8 publications

Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors

Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors

Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

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