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1. Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium

Author

Masese, Rita V, Bulgin, Dominique, Knisely, Mitchell R, Preiss, Liliana, Stevenson, Eleanor, Hankins, Jane S, Treadwell, Marsha J, King, Allison A, Gordeuk, Victor R, Kanter, Julie, Gibson, Robert, Glassberg, Jeffrey A, Tanabe, Paula, Shah, Nirmish, and Consortium, on behalf of the Sickle Cell Disease Implementation

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Rare Diseases, Clinical Research, Chronic Pain, Sickle Cell Disease, Hematology, Pain Research, Good Health and Well Being, Acute Chest Syndrome, Adolescent, Adult, Anemia, Sickle Cell, Cross-Sectional Studies, Female, Hemoglobin, Sickle, Humans, Male, Pain, Patient Admission, Self Report, Sex Characteristics, Surveys and Questionnaires, Young Adult, Sickle Cell Disease Implementation Consortium, General Science & Technology
Abstract

IntroductionSex-based clinical outcome differences in sickle cell disease (SCD) remain largely unknown despite evidence that female sex is associated with an increased lifespan. To better characterize sex-based differences in SCD, we assessed pain, treatment characteristics, laboratory measures and complications among males and females currently enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry.MethodsThe SCDIC consists of eight comprehensive SCD centers and one data coordinating center that received funding from the National Heart Lung and Blood Institute to improve outcomes for individuals with SCD. Eligibility criteria included: 15 to 45 years of age and a confirmed diagnosis of SCD. Self-report surveys were completed and data were also abstracted from the participants' medical records.ResultsA total of 2,124 participants were included (mean age: 27.8 years; 56% female). The majority had hemoglobin SS SCD genotype. Females had worse reports of pain severity (mean (SD) T-score 51.6 (9.6) vs 49.3 (10), p

Published
2021

6. Infertility and treatment‐seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry

Author

Stevenson, Eleanor, primary, Tanabe, Paula, additional, Knisely, Mitchell, additional, Masese, Rita, additional, Bulgin, Dominique, additional, Preiss, Liliana, additional, Hankins, Jane S., additional, King, Allison A., additional, Gordeuk, Victor, additional, and Shah, Nirmish, additional

Published
2023
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7. A New Phen X Collection: Sickle Cell Disease Psychosocial and Social Determinants of Health Protocols

Author

Crosby, Lori E., primary, King, Allison A., additional, Porter, Jerlym S., additional, Badawy, Sherif M., additional, Bulgin, Dominique, additional, Hardy, Steven J., additional, Arnold, Staci D., additional, Williford, Desiree, additional, Treadwell, Marsha, additional, Huggins, Wayne, additional, Ives, Cataia, additional, Sullivan, Marian, additional, and Hamilton, Carol, additional

Published
2022
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9. Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.

Author

Bulgin, Dominique, Asnani, Monika, Vorderstrasse, Allison, Royal, Charmaine, Pan, Wei, and Tanabe, Paula

Subjects
*RESEARCH, *DISCRIMINATION (Sociology), *RESEARCH methodology, *CROSS-sectional method, *SOCIAL stigma, *REGRESSION analysis, *WORLD health, *POPULATION geography, *SELF-disclosure, *COMPARATIVE studies, *QUALITY of life, *SYMPTOMS, *RESEARCH funding, *QUESTIONNAIRES, *EMPLOYMENT, *SOCIODEMOGRAPHIC factors, *SICKLE cell anemia, *ADULTS
Abstract

Sickle cell disease (SCD) is the most common inherited blood disorder in both Jamaica and the United States and is characterized by poor quality of life and debilitating complications, with the hallmark symptom being pain caused by acute and chronic conditions. Individuals with SCD often experience stigma due to their disease status, opioid use, and race. This study sought to understand the influence of perceived stigma and demographic/clinical characteristics on quality of life in adults with SCD in Jamaica (n = 50) and the United States (n = 50). Participants completed interviewer-administered surveys including demographic/clinical characteristics; the Measure of Sickle Cell Stigma (MoSCS); and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). A set of general linear models for each country was built to examine the influence of explanatory variables on the quality of life outcomes. Overall, stigma scores were low for both countries, with the exception of the MoSCS disclosure concerns and expected discrimination subscales, where scores averaged medium and high, respectively. In both countries, being employed was associated with better quality of life; and reports of stigma (internalized stigma and expected discrimination) was associated with worse quality of life. These findings have several implications for healthcare providers caring for individuals with SCD, policy makers, and researchers. Specifically, findings can be used to advocate for improved access to mental health care for individuals with SCD and inform stigma reduction intervention approaches in SCD. [ABSTRACT FROM AUTHOR]

Published
2023
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11. Evaluating the efficacy of telephone‐based outreach in addressing hypertension control among black men with severe hypertension: An observational study

Author

Raman, Rohith Sai, primary, Biola, Holly, additional, Bakovic, Melanie, additional, Hayes, Tiffany, additional, Whitney, Colette, additional, Bulgin, Dominique, additional, Kang, Yunah, additional, Eck, Cameron, additional, Gilchrist, L’Tanya, additional, Caesar, Awanya, additional, Chaplin, Joan, additional, and Granger, Bradi, additional

Published
2022
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14. Longitudinal study of the cascading effects of racial discrimination on parenting and adjustment among African American youth

Author

Murry, Velma McBride, primary, Gonzalez, Catherine M., additional, Hanebutt, Rachel A., additional, Bulgin, Dominique, additional, Coates, Erica E., additional, Inniss-Thompson, Misha N., additional, Debreaux, Marlena L., additional, Wilson, Walter E., additional, Abel, Dalton, additional, and Cortez, McKenna B., additional

Published
2021
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16. Nurses should oppose police violence and unjust policing in healthcare

Author

Jeffers, Kia Skrine, primary, Siddiq, Hafifa, additional, Martinez-Hollingsworth, Adrienne S., additional, Aronowitz, Shoshana V., additional, Sinko, Laura, additional, Travers, Jasmine L., additional, Tolentino, D. Anthony, additional, Burns, Jade, additional, Bell, Sue Anne, additional, Beck, Dana C., additional, Gutierrez, Jose I., additional, Bulgin, Dominique, additional, Manges, Kirstin A., additional, Mansfield, Lisa N., additional, Bettencourt, Amanda P., additional, Jun, Jin, additional, Fauer, Alex J., additional, Lipsky, Rachele K., additional, Adynski, Gillian I., additional, and Choi, Kristen R., additional

Published
2021
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17. Longitudinal study of the cascading effects of racial discrimination on parenting and adjustment among African American youth.

Author

Murry, Velma McBride, Gonzalez, Catherine M., Hanebutt, Rachel A., Bulgin, Dominique, Coates, Erica E., Inniss-Thompson, Misha N., Debreaux, Marlena L., Wilson, Walter E., Abel, Dalton, and Cortez, McKenna B.

Subjects
PREVENTION of mental depression, ANXIETY prevention, PREVENTION of racism, TRANSITION to adulthood, PHYSIOLOGY, CHILD development, MENTAL health, PARENTING, ATTACHMENT behavior, CONCEPTUAL structures, THEORY, MILIEU therapy, DESCRIPTIVE statistics, PARENT-child relationships, SOCIAL skills, EMOTION regulation, LONGITUDINAL method, AFRICAN Americans
Abstract

Attachment theory posits that parenting plays akey role in children's attachment and subsequent development. Given the normativity of racial discrimination on everyday life experiences of African American families, there is a need to integrate historical and socio-environmental processes in studies to understand how minoritized parents raise secure and stable children. Results from the current study revealed direct associations between mothers' reports of discrimination and heightened depression and anxiety. Maternal discriminatory experiences were indirectly associated with more negative parenting and compromised parent-child relationship quality, through mothers' psychological functioning. Elevated emotional and behavioral management problems among youth were directly associated with exposure to racial discrimination. Exposure to discrimination during middle childhood facilitated adapted or learned strategies to manage similar situations as youth transitioned into adolescence, with reduced patterns of depressive symptomology. No significant gender effects emerged. Implications for theoretical advancement and future research are provided. [ABSTRACT FROM AUTHOR]

Published
2022
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19. Predictors of Maternal Morbidity Among Participants Enrolled in the Sickle Cell Disease Implementation Consortium Registry

Author

Masese, Rita V, primary, Bulgin, Dominique, additional, Preiss, Liliana, additional, Knisely, Mitchell, additional, Stevenson, Eleanor, additional, Hankins, Jane S., additional, Treadwell, Marsha, additional, King, Allison A., additional, Gordeuk, Victor R., additional, Kanter, Julie, additional, Gibson, Robert, additional, Glassberg, Jeffrey A., additional, Tanabe, Paula, additional, and Shah, Nirmish, additional

Published
2020
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20. Sex Based Differences in Sickle Cell Disease

Author

Masese, Rita V, primary, Bulgin, Dominique, additional, Knisely, Mitchell, additional, Preiss, Liliana, additional, Stevenson, Eleanor, additional, Hankins, Jane S., additional, Treadwell, Marsha, additional, King, Allison A., additional, Gordeuk, Victor R., additional, Kanter, Julie, additional, Gibson, Robert, additional, Glassberg, Jeffrey A., additional, Tanabe, Paula, additional, and Shah, Nirmish, additional

Published
2020
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22. Stigma, Disease Self-Management, and Quality of Life in Adults with Sickle Cell Disease

Author

Bulgin, Dominique and Tanabe, Paula

Subjects
health-related quality of life, self-management, Health sciences, Social research, sickle cell disease, Nursing, health-related stigma
Abstract

Dissertation, Sickle cell disease (SCD) is the most common genetic blood disorder in the United States (US) and Jamaica and primarily affects individuals of African descent. SCD can result in severe and debilitating complications, including vaso-occlusive crises and organ damage. To prevent these complications SCD requires complex self-management. SCD is associated with significantly shortened lifespans in both countries. Many personal and background factors including, perceived stigma, demographics (country, age, race, sex, socioeconomic status) and clinical (disease severity, hydroxyurea use, genotype) characteristics may influence self-management strategies and health-related quality of life (QoL) in SCD. These characteristics have not been explored fully in either country and there are many differences between countries in how SCD is managed and stigma is perceived. This dissertation aims to develop knowledge related to the relationships between SCD self-management, stigma of SCD, and health-related QoL. A systematic literature review was conducted to appraise the current state of knowledge surrounding stigma of SCD. Conclusions from this review revealed that 1) sources of stigma were varied including institutions, healthcare systems and providers, and interpersonal relationships; 2) stigma had negative impacts on participants’ social, psychological, and physiological well-being; 3) stigma had resulted in poor patient-provider relationships and altered care-seeking behaviors in individuals with SCD, and 4) there are gaps in the literature regarding the influence of sources of stigma on self-management and QoL. The primary study of this dissertation utilized a cross sectional, convergent parallel mixed methods design (individual interviews and self-report surveys). Participants were interviewed about disease self-management strategies and how sources of stigma influence these strategies. Demographic and clinical characteristics were assessed using questionnaires. Quantitative measures were used to assess perceived stigma [SCD Health-Related Stigma Scale (SCD-HRSS) and Measure of Sickle Cell Stigma (MoSCS)] and health-related QoL [Adult Sickle Cell Quality of Life Measures (ASCQ-Me)]. Because there were no publication using the ASCQ-Me to assess health-related QoL in adults with SCD, aside from psychometric studies, a pilot study was conducted evaluating the feasibility of using the ASCQ-Me prior to the primary dissertation study. Use of ASCQ-Me was determined to be feasible. There were several important findings in the primary dissertation study. Employment and low disease severity were significant predictors of health-related QoL. Nonetheless, participants reported experiencing stigma from family, friends, and people in the workplace and school that impeded their access to the social support and financial resources needed to effectively self-manage. Self-management strategies were similar between the two countries with the exception of there being less opioid use and a greater focus on nutrition in Jamaica. Lastly, participants in both countries, regardless of demographic and clinical characteristics, reported perceiving stigma from healthcare settings. As a result, they altered their self-management in many ways including avoiding or delaying seeking care and pain management. Findings from this study will be used to generate hypotheses for future studies seeking to improve self-management and QoL of individuals with SCD in the presence of stigma.

Published
2019

27. Twelve tips for teaching a comprehensive disease-focused course with a global perspective: A sickle cell disease example.

Author

Bulgin, Dominique, Tanabe, Paula, Asnani, Monika, and Royal, Charmaine D. M.

Subjects
*CONCEPTUAL structures, *CURRICULUM, *EXPERIENCE, *HEALTH behavior, *HEALTH care teams, *INTERDISCIPLINARY education, *LONGEVITY, *MEDICAL education, *SICKLE cell anemia, *SOCIAL skills, *TEACHING methods, *HEALTH education teachers, *PATIENT-centered care, *HEALTH literacy
Abstract

A disease-focused course entitled "Understanding Sickle Cell Disease: A Biopsychosocial Approach" addressed the complex nature of SCD using patient-centered, global and interdisciplinary approaches. Sickle cell disease (SCD) is a rare inherited blood disorder that requires multidisciplinary care. Worldwide 20–25 million individuals have SCD, which is associated with a shortened lifespan due to many medical complications and social and behavioral health challenges. Health care professionals often have limited knowledge of SCD as they typically learn about it within the context of their own disciplines. This article provides twelve tips for educators that can be used to develop a similar course on any disease, with considerations for both low- and high-resource countries. The tips were devised from personal experience and available literature. Through these twelve tips, we provide a practical framework for increasing knowledge of complex diseases like SCD using a comprehensive elective course. [ABSTRACT FROM AUTHOR]

Published
2019
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