Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice

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Community Based Research [clear filter]
Friday, October 12

3:15pm EDT

Patient and Caregiver Perspectives on Areas of Burden In Sickle Cell Disease Management

Dr. Tilicia Mayo-Gamble- Georgia Southern University, Dr. Velma McBride Murry- Vanderbilt University, Ms. Alexis Gorden- Sickle Cell Foundation of Tennessee, Ms. Delores Quasie-Woode- Georgia Southern University

Objective: Sickle cell disease (SCD) has a substantial impact on both the health of individuals affected and healthcare utilization in the United States. Successful disease self-management is shown to positively affect health outcomes and decreases overall healthcare utilization. Yet, many SCD patients and caregivers are faced with external barriers that limit their ability to self-manage their disease. As part of a patient-centered outcomes research study, we partnered with the Sickle Cell Foundation of Tennessee to determine areas of greatest need in disease management among individuals with SCD and caregivers residing urban and rural communities.  
Methods: Individuals with SCD and their caregivers (N=43) completed open-ended questionnaires on barriers and challenges to SCD management. Participants were asked questions on: (1) issues of concern regarding sickle cell health care management; (2) conditions which place the greatest burden when trying to effectively manage care; (3) possible solutions to lessen these burdens; and (4) thoughts about ways of providing health care to increase optimal health functioning for patients with SCD. Content analysis was conducted on responses to identify important emerging themes. Responses were analyzed collectively noting differences in urban and rural groups.  
Results: Six themes emerged illustrating areas of burden in SCD management for patients and caregivers residing in urban and rural communities: (1) pain management; (2) communicating with healthcare providers; (3) stigma as a drug-seeker; (4) limited SCD knowledge among providers outside of hematology; (5) absence of treatment protocols; and (6) a need for enhanced disease management resources for both patients and caregivers. Two additional themes were central to patients and caregivers residing in rural communities: (1) the need for satellite clinics; and (2) distance to a hematologist.  
Conclusions: Findings revealed patient-centered priorities that need to be addressed to facilitate successful management of SCD. Patients and caregivers living in rural communities have similar concerns as those living in urban areas; yet, their distance from a sickle cell clinic and/or hematologist creates additional barriers to care. Areas of burden identified will be useful for increasing self-management resources that are tailored according to patient-centered preferences, as well as developing provider interventions to enhance care for patients living in urban and underserved rural communities.

avatar for Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Assistant Professor, Department of Community Health Behavior and Education
Dr. Mayo-Gamble is an Assistant Professor in Jiann-Ping Hsu College of Public Health, Department of Community Health Education and Behavior at Georgia Southern University. She conducts research on community engaged approaches to increasing access to care and facilitating self-management... Read More →

Friday October 12, 2018 3:15pm - 3:30pm EDT
Baltimore/ Annapolis

3:30pm EDT

Finding SCD Patients In Michigan - A Case Study

Ms. Jeanne M. Loboda- Global Blood Therapeutics, Dr. Kartik S. Pappu- Global Blood Therapeutics, Ms. Robin C. Howard- Global Blood Therapeutics, Mr. Vincent Y. Siu- Global Blood Therapeutics, Ms. Wanda Whitten-Shurney- Sickle Cell Disease Association of America–Michigan Chapter

Objective: Sickle cell disease (SCD) is a genetic, lifelong blood disorder that can cause significant, long-term, severely disabling, and costly clinical complications. Many individuals with SCD, especially adults, lack access to hematologists with significant experience treating SCD. Many providers in the primary care setting have limited knowledge of SCD and available therapies. Provider and patient disease education is a vital component of quality care delivery in this setting.
We describe the results of a recent collaboration between the Michigan Chapter of the Sickle Cell Disease Association of America (SCDAA-MI) and Global Blood Therapeutics, a biotechnology company dedicated to developing novel disease-modifying therapies for SCD, to better target community providers and patients for educational outreach programs in the state of Michigan. A special focus was placed on federally qualified healthcare centers (FQHCs) near areas with moderate to high densities of affected individuals.
The ability to target outreach efforts is particularly relevant to the SCDAA-MI’s role as the subrecipient of 2 health resource and service administration (HRSA) grants. One of the major objectives of the Sickle Cell Treatment Demonstration Grant is to educate physicians about the management of SCD. The Newborn Screening Grant is focused on identifying patients previously lost to follow-up, placing them in a medical home, and providing care coordination.
Methods: Pharmacy and medical claims for patients with at least 2 SCD specific health care claims (using SCD specific ICD9/10 codes) from Symphony Health’s Integrated Dataverse™ were analyzed. This longitudinal patient dataset captures claims across the United States and covers all payment types, including Medicaid, Medicare, commercial plans, cash, and assistance programs. All data collected from the database is deidentified in compliance with the patient confidentiality requirement of the Health Insurance Portability and Accountability Act.
We first identified individuals residing in the state of Michigan with at least 1 ICD9/10 code for SCD in each of the 2 most recent years (2016 and 2017). We then analyzed each individual’s age (derived from birth year), geographic location (using the first 3 digits of the zip code of residence [zip3]), and healthcare payer (derived from payment type). Visits to a hematologist during 2016 and 2017 were quantified through the National Provider Identifier number associated with each claim. Finally, we overlaid the locations of the latest list of FQHCs in Michigan on an SCD population density map to identify the FQHCs with the largest local SCD populations.
Results: A total of 1628 individuals were identified in Michigan with at least 1 SCD-related claim in both 2016 and 2017. Of these, 83% were older than age 18 years, and 60% had Medicaid as their primary payer (of those that do have payer information provided). The distribution of these individuals with SCD was geographically concentrated: 69% resided in 3 zip3 areas (Figure 1). A majority of pediatric patients (64%) and of adult patients (71%) had not seen a hematologist at least once a year in 2016 and 2017. We identified 52 FQHCs that serviced the 3 zip codes with the largest share of individuals affected by SCD.
 Conclusions: Individuals with SCD in Michigan are geographically concentrated. Most individuals with SCD in Michigan have Medicaid as their primary medical insurance provider. Although it is likely that some patient visits are not captured in this dataset, this analysis nevertheless demonstrates that most individuals with SCD in Michigan have reduced access to hematologists. Therefore, it is crucial to identify and provide disease education to community providers that service the Medicaid population and have the potential to treat significant volumes of individuals with SCD. To this end, we have identified several FQHCs that might serve as recipients of initial outreach by the SCDAA-MI. This establishes a case study for biotechnology and pharmaceutical companies to work in concert with local advocacy organizations to better focus outreach efforts on improving disease education and care delivery. Making similar data available to other HRSA grantees as well as other community-based organizations could prove to be of great benefit in targeting efforts to maximize all aspects of care.


Jeanne Loboda

Senior Director, Global Blood Therapeutics
Accomplished healthcare marketer and strategist with oncology and rare disease experience. Proven builder of brand and product launch teams. Skilled leader recognized for developing functional and team visions and translating them into achievements. Keen ability to identify unmet... Read More →
avatar for Wanda Whitten-Shurney, MD

Wanda Whitten-Shurney, MD

Pediatrician, Sickle Cell Disease Associtaion, Michigan Chapter Inc.
Dr. Shurney is a pediatrician at Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan where she has provided out – patient care for children who have sickle cell disease for the past 19 years.  Her interest in sickle cell disease is “genetic”.  She inherited... Read More →

Friday October 12, 2018 3:30pm - 3:45pm EDT
Baltimore/ Annapolis

3:45pm EDT

The Communication, Awareness, Relationship and Empowerment (C.A.R.E.) Model: An Effective Tool for Engaging Urban Communities in Community-Based Participatory Research

Ms. Marlene Peters-Lawrence- National Heart, Lung, and Blood Institute/National Institutes of Health, Ms. Joniqua Ceasar- National Heart, Lung, and Blood Institute/National Institutes of Health, Dr. Tiffany Powell-Wiley- National Heart, Lung, and Blood Institute/National Institutes of Health, Mrs. Valerie Mitchell- National Heart, Lung, and Blood Institute/National Institutes of Health

Little is known about recruitment methods for racial/ethnic minority populations from resource-limited areas for community-based health and needs assessments, particularly assessments that incorporate mobile health (mHealth) technology for characterizing physical activity and dietary intake. We examined whether the Communication, Awareness, Relationships and Empowerment (C.A.R.E.) model could reduce challenges recruiting and retaining participants from faith-based organizations in predominantly African American Washington, D.C. communities for a community-based assessment. Employing C.A.R.E. model elements, our diverse research team developed partnerships with churches, health organizations, academic institutions and governmental agencies. Through these partnerships, we cultivated a visible presence at community events, provided cardiovascular health education and remained accessible throughout the research process. Additionally, these relationships led to the creation of a community advisory board (CAB), which influenced the study's design, implementation, and dissemination.
Each part of the C.A.R.E. model involved specific strategies that were implemented throughout various stages of the study.
Over thirteen months, 159 individuals were recruited for the study, 99 completed the initial assessment, and 81 used mHealth technology to self-monitor physical activity over 30 days.
The culturally and historically sensitive C.A.R.E. model strategically engaged CAB members and study participants. The C.A.R.E. model was essential for the success in recruitment and retention of an at-risk, African American population and may be an effective model for researchers hoping to engage racial/ethnic minority populations living in urban communities. The C.A.R.E research recruitment model was implemented in a randomized clinical trial for sickle cell disease. (figure attached publication pending).

avatar for Marlene Peters-Lawrence, BSN, RN, RRT

Marlene Peters-Lawrence, BSN, RN, RRT

Clinical Trial Specialist, National Heart Lung and Blood Institute
Marlene Peters -Lawrence is a Clinical Trials Specialist in the Division of Blood Diseases and Resources, Blood (DBDR), Epidemiology and Clinical Therapeutics Branch at the National Heart Lung and Blood Institute (NHLBI). Ms. Peters-Lawrence has been with NIH for over fifteen years... Read More →

Friday October 12, 2018 3:45pm - 4:00pm EDT
Baltimore/ Annapolis

4:00pm EDT

Technology Access And Preferences For Smartphone Application Content Among Adults With Sickle Cell Disease And Their Caregivers

Dr. Tilicia Mayo-Gamble- Georgia Southern University, Dr. Velma McBride Murry- Vanderbilt University, Ms. Alexis Gorden- Sickle Cell Foundation of Tennessee, Ms. Delores Quasie-Woode- Georgia Southern University
Objective: Sickle cell disease (SCD) is a chronic disease that affects over 100,000 individuals in the United States, of whom many are from underserved communities with limited access to disease management resources. The purpose of this study was to determine access to resources in the form of technology and preferences for self-care management and social support in adults with SCD and their caregivers residing in urban and rural communities.
Methods: Community Health Ambassadors led community listening sessions (n=4) with adults with SCD and their caregivers (n=43) in two urban and two rural communities throughout Tennessee. Community listening sessions are a qualitative method of obtaining feedback that allows individuals to express their views on an issue in a more wide-ranging manner. Participants were asked questions on: (1) methods of finding information about SCD self-care; (2) satisfaction with current methods for finding SCD management information; (3) support for SCD management; 4) important features for development of a smartphone application (app) SCD; and (5) areas of benefit for using a smartphone app for SCD self-care. Content analysis identified emerging themes.
Results: Five critical themes emerged: (1) desired information; (2) types of support for SCD self-care; (3) recommendations for disseminating information to the sickle cell community; (4) barriers and facilitators to using an app; and (5) desirable features for a SCD mobile app. All participants had a smartphone but most did not have an iphone. Most participants would prefer to receive regular emails on SCD management from a credible source. Participants also expressed a range of comfort levels with using a mobile app but were open to trying an app for SCD self -care and SCD social support.
 Conclusions: Through our discussions we learned more about how to reduce barriers to accessing information by offering a technology platform based on patient and caregiver preferences. Findings can be used to develop a patient-centered, user-friendly smartphone application to facilitate disease self-management among individuals with SCD and their caregivers; thus, increasing access to resources for families residing in rural communities.

avatar for Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Assistant Professor, Department of Community Health Behavior and Education
Dr. Mayo-Gamble is an Assistant Professor in Jiann-Ping Hsu College of Public Health, Department of Community Health Education and Behavior at Georgia Southern University. She conducts research on community engaged approaches to increasing access to care and facilitating self-management... Read More →

Friday October 12, 2018 4:00pm - 4:15pm EDT
Baltimore/ Annapolis

4:15pm EDT

Digital Engagement In The Sickle Cell Community

Ms. Robin C. Howard- Global Blood Therapeutics, Mr. Daniel C. Reinhardt- Return on Focus,
Ms. Jeanne M. Loboda- Global Blood Therapeutics, Ms. Abigail M. Manning- Return on Focus

Objective: Sickle cell disease (SCD) is a genetic, lifelong blood disorder. Many individuals with SCD lack access to adequate resources and care because of the small number of hematology specialists and primary care physicians who have experience treating the disease.
Connecting families with SCD with educational resources to help them better understand the disease, available treatment options, and sources for support is crucial to promote health literacy, improve communication with health care providers, and foster dialogue with the broader community. The goal of this study was to understand how caregivers and individuals with SCD engage digitally to find, use, and share information related to SCD.
Methods: In December 2017, a 25-question online survey was fielded by Return on Focus to address the study goals. Eligible participants included primary caregivers of children aged 6-17 years and adults aged 18-60 years with SCD. Participants were required to reside in the US. Participants were recruited via an online panel.
Results: A total of 61 participants completed the survey. Participants included 51 adults with SCD and 10 primary caregivers of children with SCD.
In the adult participant cohort, 65% were male and the average age was 37 (range 22-55 years); 84% reported current or past use of hydroxyurea; 56% reported seeing a primary care physician (PCP) for the treatment of SCD, and 33% reported seeing a hematologist; 49% reported attaining a bachelor’s degree, and 25% reported attaining an advanced degree.
In the primary caregiver cohort, 60% reported caring for a male child, and the average age of the child cared for was 10 (range 6-15 years); 70% reported current or past use of hydroxyurea; 50% reported seeing a PCP for the treatment of SCD, and 30% reported seeing a hematologist; 60% reported attaining a bachelor’s degree, and 30% reported completing some college.
More than half of the participants reported that they had good or very good knowledge of SCD and its treatments overall. About three-quarters of adults and half of caregivers reported searching digitally for information related to SCD at least weekly. Approximately 40% of adults and caregivers reported using a mobile or smart phone to search for information related to SCD almost daily. Desktops, laptops, and tablets were also used but less frequently, and they were more likely to be used weekly.
Adults and caregivers were very likely to seek information via general searches (eg, Google), as well as by browsing their treatment centers, professional societies, and general health and medicine websites, with treatment centers and professional societies rated as highly influential sources. Participants highly valued information provided by health care providers, but information provided by family and friends was also very valuable when making treatment or medication decisions related to SCD. SCDAA, Sickle Cell 101, WebMD, and Mayo Clinic were top visited sites overall, with more than 25% of participants visiting these sites in the past 6 months. For caregivers, KidsHealth was also a top site, with half of participants visiting within the same time period.
Over 60% of participants reported taking information that they found online to their healthcare provider for further discussion. About one-third of participants reported sharing information they found online with family and friends, and about 20% reported using information they found online to advise others about SCD.
These results compare favorably when compared with normative data for the same questions that have been asked of respondents living with other diseases (including migraine, idiopathic pulmonary fibrosis, cardiovascular disease, and cancer) indicating that individuals with SCD are very active and highly amenable to receiving disease education online.
Conclusions: Individuals with SCD and primary caregivers of children with SCD are active seekers of information online, and many are using information that they find digitally to help inform discussions with their healthcare providers. Various devices are used for online searches. Mobile devices are used most often, but laptop and desktop computers are also used by the same individuals, though less frequently. Content should be formatted across a variety of screen sizes, to ensure readability and an overall good user experience. Materials should be developed for ease of printing or sharing, so patients can easily bring them to their healthcare provider visits to drive productive conversations. Given the high reliance on Internet searches to seek information, it is important for providers of disease education content to consider search engine optimization in their strategies.


Robin C. Howard

Market Strategist, Global Blood Therapeutics

Friday October 12, 2018 4:15pm - 4:30pm EDT
Baltimore/ Annapolis

4:30pm EDT

Novel Ways To Recruit New Health Care Professionals Into The Sickle Cell Arena

Dr. Dr. Majorie Dejoie-Brewer- SCDAA/PDVC, Mrs. Donna Pennington Monroe, MS- SCDAA/PDVC

Increasing the number of qualified health care professionals who are knowledgeable, qualified and interested in sickle cell disease has been a primary initiative of the SCDAA national organization and the community at large. Recruiting future providers through nontraditional partnerships has been a focus of the SCDAA /PDVC chapter. One partnership formed with an initiative called "Bridging The Gaps" has done exactly that. Through this partnership are able to expose future physicians, nurses, social workers, dentists and veterinarians to the needs of the sickle cell community and their potential role as a member of their health care team. This program allows for a complete immersion of interns into the lives of individuals living with sickle cell disease. Through structured programming, education and exposure they are able to gain a true understanding of the disease process, the health care needs of the population , the bio-psychosocial paradigm, the social isolation, health care barriers and the daily struggle faced by these individuals. They are then challenged to develop an initiative that would benefit this population, develop a heart healthy program and develop a presentation on sickle cell disease for a community health symposium. This forum gives them an opportunity to see sickle cell disease through a different lense, become passionate about the population, communicate that compassion and enthusiasm to other providers and spark a true interest in wanting to care for the sickle cell population. The impact of this partnership has been significant and the individuals living with the illness have been the primary beneficiaries.
Objective: expose and recruit future HCP to sickle cell disease.
Methods: formal partnership with The Bridging the Gaps program. Training two interns for seven weeks, open forums with approximately 200 future providers, and four health awarness events.
Results: Improve understanding and increase the interest among future providers who may not exposed to SCD at all until later in their career. Increased awareness among HCPS, advocates, activists, other universities and community organizations.
Conclusion: More alliances such as these need to be formed so that our growing population will have capable, knowledgeable and caring providers in the future.


Donna Pennington Monroe, MS

Community Health Worker/ Research Coordinator, Sickle Cell Association
Donna Pennington Monroe has knowledge, skills, and experience in healthcare policy and delivery focusing on developing programs that educate and empower patients to improve their quality of life while reducing inefficiency, cost and improving access to care. Skilled in developing... Read More →

Friday October 12, 2018 4:30pm - 4:45pm EDT
Baltimore/ Annapolis

4:45pm EDT

Geography Seems To Be A Factor That Determines The Outcome Of Transition For Children With Sickle Cell Disease Into Adult Programs

Dr. Nina Anderson, RN, DNP- TOVA Healthcare, Dr. Samir Ballas- Cardeza Foundation for Hematologic Research

The transition of patients with sickle cell disease (SCD) from pediatric to adult care providers represents a milestone in their lives. Major concerns among adolescents and young adults about transition include taking responsibility for self, making own decisions, cost of medical care, fear of suboptimal pain management, and reluctance to leave known providers. The reasons that cause this surge in mortality after transition are not well known. The role of geographical variations in the same country that affect the outcome of transition is examined in two major metropolitan cities include Philadelphia, PA and Atlanta, GA. In Philadelphia, 90 adolescents and young adults with SCD were followed prospectively for 10 years (1994-2004) after transition from the pediatric sickle cell program at St. Christopher Hospital to the adult sickle cell center at Thomas Jefferson University Hospital. The rate of death in Philadelphia was highest in patients with SCD-SS type where 17 out of 65 patients (26%) died within the 10 years after transition. Complications of SCD after transition included stroke, acute chest syndrome, avascular necrosis, leg ulcers, anxiety, depression, priapism and multi-organ failure. About one-third of the patients developed persistent pain between vaso-occlusive crises.
In Atlanta, 387 adolescents and young adults records were reviewed retrospectively for 10 years (1996-2006). Most important among these is that the rate of death in Atlanta was overall much lower than that in Philadelphia: 5.8% in Atlanta versus 22.2% in Philadelphia during the 10 years after transition. The major cause of death in Atlanta was iron overload due chronic organ damage. The care systems available to the youth in the two cities differ because the Georgia Comprehensive Sickle Center at Grady provides emergency care 24 h a day 7 days a week and has had an active transition program since 1985. Other possible causes include the warmer weather in Atlanta, the cultural and psychosocial community fabric in Atlanta may be more attentive to the problems associated with SCD and the genetic types of SCD in Atlanta may include those that are known to be associated with milder disease. These types include the Senegalese haplotype that is more common in Southern USA. In the Philadelphia area the Benin haplotype, known to be associated with more severe disease, is most common.

avatar for Nina Anderson, RN, DNP

Nina Anderson, RN, DNP

Executive Director & Founder, Tova Community Health
Nina F. Anderson, DNP, RN, FNP-BC is executive director and founder of Tova Community Health, Inc., and an advanced practice nurse care coordinator and nurse Consultant at Tova Healthcare in Wilmington, DE. She previously served as director of the Adolescent and Young Adult Interdisciplinary... Read More →

Friday October 12, 2018 4:45pm - 5:00pm EDT
Baltimore/ Annapolis