The health literacy disparity in adolescents with sickle cell disease

2021 ◽  
Author(s):  
Elizabeth Perry Caldwell ◽  
Erin Killingsworth
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

scholarly journals Health Literacy in Adolescents With Sickle Cell Disease

2017 ◽  
Vol 36 ◽  
pp. 191-196 ◽  
Author(s):  
Elizabeth L. Perry ◽  
Patricia A. Carter ◽  
Heather A. Becker ◽  
Alexandra A. Garcia ◽  
Michael Mackert ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Health literacy and disease-specific knowledge of caregivers for children with sickle cell disease

2016 ◽  
Vol 33 (2) ◽  
pp. 121-133 ◽  
Author(s):  
Marcus A. Carden ◽  
Jennifer Newlin ◽  
Wally Smith ◽  
India Sisler
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Specific Knowledge ◽  
Disease Specific

Disease-Specific Knowledge Assessment of Caregivers Is a Better Predictor of Health Care Utilization Than Caregiver Functional Health Literacy Among Children with Sickle Cell Disease

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 4240-4240
Author(s):  
Marcus A Carden ◽  
India Sisler ◽  
Jennifer Newlin ◽  
Wally R. Smith ◽  
Kamar Godder
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Functional Health ◽  
Functional Health Literacy ◽  
Cell Disease ◽  
Specific Knowledge ◽  
Ed Visits ◽  
Disease Specific

Abstract Abstract 4240 Background: Recent data suggests 20–30% of parents of young children in the United States have low health literacy. Caregiver health literacy has implications for recognizing illness and can affect child health outcome. We used the Short Test of Functional Health Literacy in Adults (S-TOFHLA), a 36-item validated measure of functional health literacy (FHL) that can be administered in a short period of time, to identify caregivers of children with sickle cell disease that had inadequate or marginal FHL. We further sought to identify caregivers' disease-specific knowledge (DSK) deficits by administering our own unique questionnaire. We then determined if FHL and DSK were related to emergency department (ED) visits and hospitalizations. Methods: We conducted a cross-sectional study of caregiver-child dyads from a sample of children aged 12 months to 18 years that presented to routine visits in a comprehensive sickle cell clinic at an urban teaching hospital. Caregivers were administered the S-TOFHLA and also given a 22-item questionnaire assessing both demographic data and also qualitative and quantitative measures of DSK. A 12-month retrospective review of the child's electronic medical record was then performed to determine number of annual emergency room visits and hospital admissions at our institution. Results: A total of n=85 caregiver-child dyads were enrolled in the study during one year of recruitment. On the S-TOFHLA, only 3/85 caregivers (3.5%) had inadequate or marginal FHL. Of all 85 caregivers, 82% identified themselves as mothers to the patient, while 6% were fathers. Nearly 97% graduated from high school. We selected 12 unique items assessing DSK on our questionnaire and gave each item a value of 1 point. Caregivers were divided based on correct answers to these 12 items using a median split, with 49/85 caregivers (n1) scoring between 9–12 and 36/85 caregivers (n2) scoring 8 or less. Although there was no difference in FHL outcome between the two groups, those in n1 scored slightly higher on the 36-item S-TOFHLA than those in n2 (average 33/36 vs. 34/36, p=0.01). Group n1 was more likely to have attended college (p=0.03) and children of caregivers in this group were younger (average age 9 years vs. 12 years, p=0.008). Children of caregivers in n1 were nearly twice as likely to visit the ED than those in n2 (p<0.01). Rates of hospitalizations were similar between the two groups, but the ratio of hospitalizations to ED visits for group n1 was 1.3 times that of n2. Conclusion: Only 3.5% of caregivers of children with sickle cell disease had inadequate or marginal FHL. Our data suggests caregivers with more DSK were more educated and more likely to identify illness in their children. Knowledge-based questionnaires for chronic childhood illnesses such as sickle cell disease may be more useful than standard measurements of FHL to assess caregivers' ability to identify and react to illness. Disclosures: No relevant conflicts of interest to declare.

Health literacy and knowledge of chronic transfusion therapy in adolescents with sickle cell disease and caregivers

2019 ◽  
Vol 66 (7) ◽  
pp. e27733 ◽  
Author(s):  
Marianne E. McPherson Yee ◽  
Erin K. Meyer ◽  
Ross M. Fasano ◽  
Peter A. Lane ◽  
Cassandra D. Josephson ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Transfusion Therapy

scholarly journals Social aspects of chronic transfusions: addressing social determinants of health, health literacy, and quality of life

Hematology ◽  
2020 ◽  
Vol 2020 (1) ◽  
pp. 175-183
Author(s):  
Jennifer Webb
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Sickle Cell Disease ◽  
Social Determinants Of Health ◽  
Sickle Cell ◽  
Social Determinants ◽  
Determinants Of Health ◽  
Cell Disease ◽  
Transfusion Therapy

Abstract Chronic monthly transfusions are a lifesaving preventative therapy for many patients with sickle cell disease; however, the burden of this therapy for patients and families is high. In the United States, there is overlap in the population affected by sickle cell disease and those with the greatest burden of social needs. Hematology providers caring for patients with SCD have an opportunity to screen for and mitigate social determinants of health, especially in those receiving chronic transfusion therapy given the frequent interactions with the healthcare system and increased demand on already potentially limited resources. Given the complexity of the treatment and medication regimens, providers caring for patients receiving chronic transfusions should implement universal strategies to minimize the impact of low health literacy, as this therapy imposes a significant demand on the health literacy skills of a family. Despite the social and literacy burden of this intervention, it is reassuring that quality of life is preserved as patients with SCD on chronic transfusion therapy often report higher health related quality of life than their peers receiving other disease modifying therapies.

The Use of the Newest Vital Sign Health Literacy Instrument in Adolescents With Sickle Cell Disease

2018 ◽  
Vol 35 (5) ◽  
pp. 361-367 ◽  
Author(s):  
Elizabeth Perry Caldwell ◽  
Patricia Carter ◽  
Heather Becker ◽  
Michael Mackert
Keyword(s):  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Vital Sign ◽  
Criterion Validity ◽  
Cell Disease ◽  
Cross Sectional ◽  
Convenience Sample ◽  
The Mean ◽  
Newest Vital Sign

The purpose of this article is to discuss the use of the Newest Vital Sign (NVS) health literacy instrument in adolescents with sickle cell disease. The NVS evaluates both literacy and numeracy (the ability to understand and work with numbers) as well as the ability to locate and apply information. It is important to validate the NVS for use in adolescents, as the only currently validated instrument, the Rapid Estimate of Adolescent Literacy in Medicine–Teen (REALM-Teen), does not measure numeracy or the ability to locate or apply information. This cross-sectional, descriptive, exploratory correlational study included appraisal of data from completion of the REALM-Teen and NVS instruments by a convenience sample of 75 adolescents with sickle cell disease. The mean age of this study sample was 14.7 years ( SD = 2.2). The mean grade level of participants was 8.7 ( SD = 2.2). Internal consistency for the NVS in this population was acceptable (α = .63). Criterion validity was based on correlations between raw scores on the NVS and raw scores on the REALM-Teen. There was a significant moderate, positive correlation between NVS and REALM-Teen scores ( r = .38, p < .01), demonstrating good criterion validity. Preliminary evidence for reliability and validity of the NVS in this population was established.

scholarly journals Utilizing Medical Students As Patient Mentors: An Intervention to Improve Transition Readiness in Young Adults with Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 34-35
Author(s):  
Adrienne Viola ◽  
Richard A. Drachtman ◽  
Amanda Kaveney ◽  
Ashwin Sridharan ◽  
Beth Savage ◽  
...  
Keyword(s):  
Young Adults ◽  
Medical Student ◽  
Health Literacy ◽  
Medical Students ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Transition Readiness ◽  
Student Mentors ◽  
Student Mentor

Background:Advances in medical care have resulted in nearly 95% of all children with sickle cell disease (SCD) living to adulthood. Standardized transition programming does not currently exist, resulting in high rates of mortality and morbidity among young adults (YA) during the transition period. Mentoring and social support have been used to impact health behavior change. Medical student mentors can serve as mentors offering specialized support for YA. This study examined the feasibility and preliminary efficacy of a medical student mentor intervention to improve transition outcomes for YAs with SCD. Methods:24 YA with sickle cell disease and 9 medical student mentors enrolled in the intervention. Feasibility and acceptability of the intervention was assessed through enrollment rates, reasons for refusal, retention rates, engagement with the intervention, satisfaction, and reasons for drop-out. The preliminary efficacy of the intervention among patient participants was assessed using dependent t-tests to evaluate changes in transition readiness, health related quality of life, self-efficacy, SCD knowledge medication adherence, and health literacy. Among medical student mentor participants, changes in attitudes towards chronic illness and SCD knowledge were explored. Results:Patient participants demonstrated adequate enrollment (63.2%), retention (75.0%), and adherence to the intervention (88.3%) and rated the intervention components highly. Patient participants demonstrated significant improvements in transition readiness (p= .001), self-efficacy (p= .002), medication adherence (p= .02), and health literacy (p= .05). Medical students also demonstrated significant improvements in SCD knowledge (p= .01). Discussion:A medical student mentor intervention to facilitate transition from pediatric to adult care for young adults with SCD is both feasible and acceptable to patients and medical students. Preliminary evidence suggests such an intervention may provide dual benefit for both patients and students. A randomized controlled trial is needed to evaluate efficacy. Disclosures No relevant conflicts of interest to declare.

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