Theme-Based Instruction: Making Conceptual Ties with the Sickle Cell Story

We describe the concepts and resources presented during a workshop offered to high school biology teachers using sickle cell disease as a theme in a biology course. We provide their pretest and posttest results and reactions.

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Comprehensive Sickle Cell Disease Management Is Associated with Superior Grade Attainment and High School Graduation Rates

Blood ◽

10.1182/blood-2018-99-115093 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 4692-4692

Author(s):

Kirsten Schulte ◽

Katrina Mikofalvy ◽

Lauren Beck ◽

Prasad V. Bodas

Keyword(s):

High School ◽

Sickle Cell Disease ◽

Best Practices ◽

Graduation Rates ◽

Sickle Cell ◽

High School Graduation ◽

Cell Disease ◽

High School Graduation Rates ◽

School Graduation ◽

Successful Students

Abstract Background: Sickle cell disease (SCD) in adolescents and young adults has been associated with low high school graduation rates. Complications of the disease may decrease school attendance, academic performance, and grade attainment. The graduation rate for patients with SCD enrolled in the Cooperative Study of Sickle Cell Disease (CSSD) was 71%. Poor educational outcomes might be due to a number of factors including socioeconomic status or days spent in the hospital due to illness. Neurological complications of SCD may also contribute. Stroke and microvascular ischemic events are detrimental to cognitive function and influence academic achievement and grade attainment. Patient and practitioner adherence to best practices, such as those described in the NHLBI 2014 guidelines vary widely, and the association of best practices with graduation rates has not been studied. We compared high school graduation rates of patients at Akron Children's Hospital Sickle Cell Disease Program (ACHSCDP) with national and local rates. Methods: We conducted a retrospective chart review of patients born between 1994 and 2000 who received care for all forms of SCD at ACHSCDP. Patients were identified through an onsite registry. Thirty-two patients were identified for chart review. We defined successful high school attainment as graduation from 12th grade, or having completed 11th grade by July 2018 and enrolled to begin 12th grade in Fall 2018, before or at 19 years of age. We determined successful high school attainment for patients at Akron Children's Hospital and assessed factors associated with success. Results: Patients born from 1994 to 2000 with sickle cell disease (SS, SC, SBeta-0, SBeta-+) were analyzed (n=32). Two patients transferred out of ACHSCDP prior to age 14 and were not included in our analysis. Of 30 patients studied, 14 were male and 16 were female. Twenty-six patients (86.7%) had graduated or were starting senior year as of July 2018. Of the 26 successful students, 12 (46.2%) had either an IEP or 504 (federally defined accommodation plan) in place. None of the 4 unsuccessful students had an IEP, however 1 student had a 504. Of the 26 successful students, 13 had HbSS, 1 had HbS/B o thal, 5 had HbS/B + thal, and 7 had HbSC. All 4 unsuccessful students had HbSS. Of the 26 successful students, clinical data from 4 years before graduation or 3 years before completion of the 11th grade revealed that the students were hospitalized an average of 5.77 days per year and visited the emergency department an average of 1.38 times per year. Of the 4 unsuccessful patients, data collected 4 years before the age of 19 revealed that the patients were hospitalized an average of 5.85 days per year and visited the emergency department an average of 1.37 times per year. Only one patient had a documented stroke, and this child successfully graduated from high school. Of the 26 successful students, 18 (69.2%) were enrolled in college after finishing high school and 3 students were in their senior year of high school. Discussion: In this cohort, a high percentage of patients (86.7%) graduated or were on track to graduate from high school. In the United States, approximately 90% of patients with SCD are African American. All patients analyzed here were African American. With this in mind, ACHSCDP patients' graduation rate compares favorably to estimated graduation rates across the US general population (84%), the U.S. African America population (76%), the U.S. sickle cell patient population (71%), the Ohio general population (84%), and the Ohio African American population (68%). The higher graduation rate among children at the ACHSCDP is associated with a multidisciplinary care model that prioritizes optimal hematologic care adhering to evidence based best practices including stroke risk screening and prevention, and use of hydroxyurea. In addition, team members assess for educations status and disease specific limitations at each encounter. A social worker advocates for educational needs. An outreach nurse makes school visits to educate staff and assist with implementation of federal accommodation plans. A teacher is available during inpatient stays to provide education in coordination with the patients' school. With comprehensive care, SCD is not a barrier to successful grade attainment, and academic distress in SCD patients should prompt re-evaluation of the patient's holistic medical care. Disclosures No relevant conflicts of interest to declare.

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Education, Employment, Social Support and Insurance Coverage in Adult Patients with Sickle Cell Disease

Blood ◽

10.1182/blood.v128.22.4864.4864 ◽

2016 ◽

Vol 128 (22) ◽

pp. 4864-4864 ◽

Cited By ~ 1

Author(s):

Samip Master ◽

Connie Arnold ◽

Terry Davis ◽

Richard Preston Mansour

Keyword(s):

Social Support ◽

High School ◽

Sickle Cell Disease ◽

Marital Status ◽

Cognitive Ability ◽

Sickle Cell ◽

Grade Level ◽

Adult Patients ◽

Cell Disease ◽

Almost All

Abstract Introduction: The average life expectancy of patients with sickle cell disease (SCD) has increased from early 20s well over 50 now. With improving pediatric healthcare, nearly all SCD patients become chronically ill adults, however little is known about these adult patients. This pilot study assessed adult SCD patients' age, education, literacy, employment, marital status, social support, and insurance status. Methods: A convenience sample of 100 sickle cell patients 18 and older cared for at academic medical system hematology clinic were enrolled in the study. A research assistant administered a structured interview which included demographic questions (insurance, education, employment, social support, marital status and persons taking care of them at home). PROMIS (Patient-Reported outcomes measurement information system) surveys assessed depression, anxiety and pain.Literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM-SF) and cognitive ability, using the Callahan 6-Item Screener. Results: Patients ranged in age from 19 to 66 years (mean age - 33), 100% were African Americans, 52% females. Education was varied - over one third ( 37%) did not graduate from high school, 26% were high school graduates, 14% had some college, and 12% were college graduates. Literacy was extremely low. No patient read at or above a 9th grade level, 99% < 6th grade level and 1% 7th- 8th grade. Only 16% were employed; 45% were married; 31% lived alone and 63% live with family. Almost all patients (98%) had insurance - 61% had Medicaid, 25% Medicare and 12% private insurance. Mean score of 5.77 on Callahan cognitive screener indicating patients did not need to be screened further for cognitive ability. Conclusion: Adult SCD patients in our study had very low education, literacy and employment levels. Many patients had inadequate social support. Our findings indicate that despite the fact that almost all patients were insured and theoretically had access to care, they still needed literacy and culturally appropriate information and on- going support to be able to understand and use health information and services to make appropriate health decisions and properly care for themselves. Disclosures No relevant conflicts of interest to declare.

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STEM Education for Children with Sickle Cell Disease: Unique Educational Outreach Program Taught By Near-Peer Undergraduate Students

Blood ◽

10.1182/blood-2020-142018 ◽

2020 ◽

Vol 136 (Supplement 1) ◽

pp. 12-13

Author(s):

Elaissa L. Hardy ◽

Brenda Williams ◽

Christopher Harden ◽

Oluwamayokun Oshinowo ◽

Renee Copeland ◽

...

Keyword(s):

High School ◽

Human Physiology ◽

Sickle Cell Disease ◽

Undergraduate Students ◽

Sickle Cell ◽

Educational Programming ◽

Cell Disease ◽

Hands On ◽

K 12 ◽

Hospital School

One fifth of school aged children in the US have a chronic medical illness and represent an underserved and educationally disadvantaged population. In particular, children with sickle cell disease (SCD) of all genotypes spend significant amounts of time in the medical settings and represent a potentially "captive audience" where hospitalization time can include educational activities. Accordingly, we saw an opportunity for Biomedical Engineering (BME) undergraduates at Georgia Institute of Technology, who are taught biology, medicine, engineering, and design to implement a new paradigm of K-12 Science, Technology, Engineering, and Mathematics (STEM) programming, where human physiology is used as a model framework. In collaboration with hospital school teachers at Children's Healthcare of Atlanta, we created a novel educational program where we (1) leverage the patient's own medical experience as motivation for learning, (2) develop hands-on interactive activities to teach STEM concepts that are adaptable for the patient's cognitive level, (3) provide undergraduate students with high quality meaningful patient interactions and clinical experiences, and (4) provide innovative educational programming for hospitals. The BME undergraduates enrolled in a human-centered design course focusing on iterative design, development and implementation of hands-on interactive STEM activities rooted in human physiology (Fig. 1A). Each activity contains state and national K-12 STEM standards. The BME undergraduates are well-suited to teach in the hospital environment, as they experience a strong STEM curriculum and are able to capture the true interdisciplinary nature of medical science in each activity. The undergraduates and patients are near-peer age, relationship-building occurs quickly, the patients admire them and enjoy their time together. During the 2018-19 school year we developed learning assessment questions for 2 of the most requested activities, assessing each SCD patient's mastery of the learning objectives. In the Blood Jar activity (Fig. 1B), the SCD patient builds a model of blood, learning the composition, function of each component, and importance of hydration. Sixty-five patients participated, 43% of grade K - 2, 61% of 3 - 5, 85% of 6th through High School scored Thoroughly Demonstrated. In the Bone activity (Fig. 1C), each SCD patient constructs a bone model to understand the function and structure of a bone. Twenty-nine patients participated, 28% of grade K - 2, 30% of 3 - 5, 88% of 6 - 8, and 75% of high school scored Thoroughly Demonstrated. Patient feedback (Fig. 1D) has been overwhelmingly positive, stating the activities are "fun" and "engaging" and requesting additional visits from the BME undergraduates. BME undergraduate expressed growth and learning of: disease pathophysiology, teaching and learning styles, and effective and succinct communication skills. In Georgia, Life Science is taught in 5th and 7th grade, our target demographic. Our results show at least 75% of patients in 6th grade and above demonstrated thorough understanding of the STEM topics taught, while K - 5 grade did not achieve that level of understanding. Lower scores for those patients are attributed to difficulties remembering new scientific vocabulary. Many of the BME undergraduates in our program are pre-med and use the experiences and meaningful interactions with patients in their medical school applications. As stated by a BME undergraduate after a patient interaction, "the white blood cells are like soldiers in the army! I like that! This analogy prompted the patient to think of his future. It reminded me the littlest things can make a big difference. This makes me even more excited to go into medicine." Our program represents an innovative approach to teaching STEM by: engaging SCD children, who are uniquely suited to learn important STEM concepts within the context of their own disease, provide learning to SCD patients during extended absences from school, allowing BME undergraduate students to design, develop, and teach STEM activities, provide meaningful clinical experience, and supplying quality educational programming for the hospital. This collaborative program can be straightforwardly implemented at other pediatric institutions with robust college volunteer programs and hospital school programs. Our activities can be exported and implemented at other institutions. Disclosures Lam: Sanguina, Inc: Current equity holder in private company.

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Telemedicine Has Acceptable Usability and High Satisfaction in Patients with Sickle Cell Disease

Blood ◽

10.1182/blood-2021-149111 ◽

2021 ◽

Vol 138 (Supplement 1) ◽

pp. 2982-2982

Author(s):

Shu Zhang ◽

Taylor Brown ◽

Sara Weiss ◽

Elizabeth Ruvalcaba ◽

Mandy David ◽

...

Keyword(s):

High School ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Research Funding ◽

Education Level ◽

Cell Disease ◽

Public Insurance ◽

Negatively Associated ◽

High Satisfaction ◽

Participant Characteristics

Abstract Introduction: The COVID-19 pandemic presented exceptional challenges to caring for adults with sickle cell disease (SCD) and necessitated a rapid transition to telemedicine, disrupting established care systems within a population that already faces unique and challenging medical needs. Although implementation of telemedicine care assumed reliable patient access to the requisite technology, as well as adequate spaces in which to complete visits, pre-pandemic barriers to in-person visits were also considerable, and many patients lacked access to reliable transportation and childcare or could not afford to miss work to attend clinic. Given the scarcity of research on the acceptability of telemedicine care for SCD patients, the pandemic has provided a critical and necessary opportunity to study patient satisfaction when using telemedicine modalities for regular SCD care. The objective of this study was to identify which patient groups rate telemedicine high in satisfaction and usability. Methods: We surveyed 99 patients of the Sickle Cell Clinic for adults at Johns Hopkins who had any form of SCD, were age 18 or above, and participated in at least one video visit between March-July 2020. Telemedicine satisfaction was assessed by the Telemedicine Satisfaction Questionnaire (TSQ), and usability was assessed by the System Usability Scale (SUS). Patients' engagement in their healthcare was assessed by the Patient Activation Measure (PAM13). We conducted linear regression with TSQ and SUS as outcomes and participant characteristics as predictors. Results: Participant characteristics (briefly, mean age 39, 95% African American, 72% female, and 81% with education level above high school) and their association with TSQ and SUS are shown in Table 1. Mean SUS was 72/100 (SD 15), slightly above the defined average usability of 68; mean TSQ was 4.1 (SD 0.5) on a 5-point Likert scale. Participants tended to prefer video visits for their regular care (mean rating of 6.6/10, SD 2.9) but not for management of acute pain (mean rating of 4.9/10, SD 3.2). Participants who preferred video visits for regular SCD care reported higher SUS (p<0.01) and TSQ (p<0.001). We examined the effects of age, sex, income, and education level on TSQ and SUS; higher SUS was associated with an education level above high school (p<0.05), but no other associations were consistently significant. Higher SUS was also associated with having private insurance compared to public insurance (p<0.01) and being employed full-time compared to being unemployed (p<0.05). Disability status was negatively associated with SUS (p<0.05) but not TSQ. PAM13 was associated with higher telemedicine approval as measured by both TSQ and SUS (p<0.01). Conclusions: Our findings suggest that telemedicine has above-average usability and high satisfaction for SCD patients, regardless of age, sex, and income. Patients who were more engaged with their healthcare were more likely to rate telemedicine satisfaction and usability high. Because SUS was negatively associated with disability, lower education level, public insurance, and unemployment, patients within these groups may need more assistance with telemedicine. To improve usability, clinics may consider incorporating support services for patients who have difficulty using telemedicine platforms. Altogether, telemedicine demonstrates promising acceptability to SCD patients across multiple demographic groups and may serve as another method in the toolkit for increasing accessibility to high quality care for these patients. Figure 1 Figure 1. Disclosures Lanzkron: Pfizer: Current holder of individual stocks in a privately-held company; Bluebird Bio: Consultancy; Novo Nordisk: Consultancy; GBT: Research Funding; Teva: Current holder of individual stocks in a privately-held company; Shire: Research Funding; CSL Behring: Research Funding; Novartis: Research Funding; Imara: Research Funding.

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