scholarly journals Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study

10.2196/15093 ◽  
2020 ◽  
Vol 3 (1) ◽  
pp. e15093
Author(s):  
Anjelica C Saulsberry ◽  
Jason R Hodges ◽  
Audrey Cole ◽  
Jerlym S Porter ◽  
Jane Hankins
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Participation Rate ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Web Based ◽  
Disease Knowledge ◽  
Transition Readiness ◽  
One Step

Background Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. Objective The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. Methods This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. Results Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (r=0.47) was found between the number of STEP modules completed and disease knowledge scores (P=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed <3 STEP modules (U=149.00; P=.007). Conclusions Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.

scholarly journals Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study (Preprint)

2019 ◽  
Author(s):  
Anjelica C Saulsberry ◽  
Jason R Hodges ◽  
Audrey Cole ◽  
Jerlym S Porter ◽  
Jane Hankins
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Participation Rate ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Web Based ◽  
Disease Knowledge ◽  
Transition Readiness ◽  
One Step

BACKGROUND Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. OBJECTIVE The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. METHODS This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. RESULTS Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (<italic>r</italic>=0.47) was found between the number of STEP modules completed and disease knowledge scores (<italic>P</italic>=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed &lt;3 STEP modules (<italic>U</italic>=149.00; <italic>P</italic>=.007). CONCLUSIONS Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.

scholarly journals Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3536-3536
Author(s):  
Cecelia Calhoun ◽  
Regina Abel ◽  
Hai Anh Pham ◽  
Shomari Thompson ◽  
Allison A King
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychosocial Development ◽  
Sexual Development ◽  
Independent Living ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: The transition from the pediatric setting to adult care is a challenge for many adolescents with chronic disease. Patients with sickle cell disease (SCD) represent a unique cohort as the timing of psychosocial development of adolescence often coincides with worsening end organ damage. Previously, we used the Adolescent Autonomy Checklist (AAC) modified to include SCD specific tasks that patients with SCD need to practice in order to transition to adult healthcare and independent living. This study sought to use the AAC to measure the effects of skill based educational handouts on improving self-management and transition readiness in adolescents with SCD. Methods: This was a single center, retrospective study approved by the Washington University Institutional Review Board. Inclusion criteria were patients with SCD, age 13-21 years, and completion of pre and post assessments. As standard care, patients from a pediatric hematology clinic completed the AAC-SCD. The AAC-SCD assesses skill level in twelve domains (Table). The tool includes 100 items, and users check "can do already" or "needs practice" for each item. After review with the coordinator, participants were given skill-based handouts based on up to five noted deficits. Patients completed the AAC-SCD at the subsequent clinic visit. In addition to baseline and follow up AAC-SCD data, medical and demographic data were collected via chart abstraction. All data were entered into SPSS for statistical analysis, including descriptives, paired sample T-tests, and bivariate Pearson's correlations. Results: A total of 61 patients completed baseline and follow up. Of those participants, 49.2% were female. The mean age was 15.4 (+ 2.2) years. The genotypic distribution was as follows: 67.2% HbSS, 19.7% HbSC, 3.3% HbS-beta-thal+ and 9.8% HbS-beta-thal0. The majority of patients received healthcare coverage via Medicaid (52.5%), private insurance (45.6%) and 1.6% had no insurance coverage. Twenty-five patients (42.0 %) had a history of stroke or silent cerebral infarct and 34 (55.7%) were currently taking or were previously prescribed hydroxyurea. Formal academic support (IEP or 504 Plan) was reported for 20 (32.8%) of patients. At baseline, patients needed the most help with skills in the kitchen, housekeeping, personal care and leisure. Statistically significant improvements (p< 0.05) occurred in skills related to laundry, housekeeping, healthcare, sexual development and living arrangements. Modest sized and statistically significant correlation between the receipt of the educational handouts and decreased number of items marked "needs help" occurred in the areas of money management (r=-0.27, p=0.044), vocational skills (r=-0.27, p=0.046;) and laundry (r=0.32, p=0.015). A post hoc analysis by age groups 13-15 (n= 34),16-18 (n=24) and 19-21 (n=3) showed a decreased amount of items marked "needs help" in the areas of sexual development for both 13-15 year olds (r=0.42, p=0.024) and 16-18 year olds (r=0.93, p=0.001) as well. Conclusion: Transition skills improved over time among adolescents with SCD. While we cannot say for certain if gains in knowledge occur with age as development progresses or if a formal transition program can be credited, providing educational materials on transition related skills within a clinic setting was associated with significant improvements in three of the domains. Our preliminary data offers insight into what skill deficits may be most amenable to educational interventions based on age group. As is the case with medical management, the development of a multimodal intervention is needed to prepare adolescents with SCD to transition to adult care and independent living. Clinic based education is a simple intervention that could be one component of future approaches to transition. Disclosures No relevant conflicts of interest to declare.

scholarly journals Assessing Disease Knowledge and Self-Management in Youth With Sickle Cell Disease Prior to Transition

2018 ◽  
Vol 36 (2) ◽  
pp. 143-149 ◽  
Author(s):  
Barbara Speller-Brown ◽  
Maureen Varty ◽  
Lisa Thaniel ◽  
Marni B. Jacobs
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Basic Knowledge ◽  
Self Management ◽  
Medical Attention ◽  
Age Group ◽  
Cell Disease ◽  
Management Skills ◽  
Disease Knowledge ◽  
Baseline Hemoglobin

Introduction: Transition of medical care from pediatrics to adult can be challenging and difficult. Until the 1970s, only half of patients diagnosed with sickle cell disease (SCD) reached adulthood. As a result of patients living longer, there is a growing need to understand factors that influence readiness to transition. This descriptive study examined age-specific SCD knowledge, self-management skills of patients, and education goals in a convenience sample of patients and their parents. Method: One hundred eighty-three transition surveys were distributed during scheduled hematology clinic visits. Surveys were analyzed with descriptive statistics to determine differences of knowledge between age groups, self-care skills, vocational supports, and educational goals. The parent group consists of children aged 0 to 4 years (32), 5 to 8 years (52), 9 to 11 years (12); the child group consists of children aged 9 to 11 years (24) and 12 to 15 years (31); and adolescent and young adult (AYA) group consists of children aged 16 to 21 years (32). Results: Indeed, 50% of parents of the 0 to 4 years age group and 33% of 5 to 8 years age group knew their child’s baseline hemoglobin. Only 38% of patients aged 16 to 21 years knew their baseline hemoglobin. However, 79% of patients aged 9 to 11 years, 74% of patient aged 12 to 15 years, and 78% of AYAs could name their hematology provider. Only 66% of patients aged 16 to 21 years knew what symptoms required medical attention. Discussion: Most patients and parents had adequate basic knowledge regarding SCD. AYAs lack the disease knowledge necessary to transition care away from parents to become more independent. An assessment for transition readiness should be ongoing to include disease-specific knowledge and self-management skills.

scholarly journals Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease

2019 ◽  
Vol 66 (7) ◽  
pp. e27722 ◽  
Author(s):  
Cecelia L. Calhoun ◽  
Regina A. Abel ◽  
Hai Ahn Pham ◽  
Shomari Thompson ◽  
Allison A. King
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Educational Intervention ◽  
Self Management ◽  
Cell Disease ◽  
Transition Readiness

scholarly journals Decision-making involvement, self-efficacy, and the relationship to transition readiness in youth with sick cell disease

2020 ◽  
Author(s):  
◽  
Maureen M. Varty
Keyword(s):  
Decision Making ◽  
Parent Involvement ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Management ◽  
Cell Disease ◽  
Specific Knowledge ◽  
Transition Readiness ◽  
Healthcare Settings

Transition from pediatric to adult healthcare settings poses significant risks to morbidity and mortality for adolescents and young adults with sickle cell disease. Increasing transition readiness, the acquisition of disease-specific knowledge and self-management skills, has been proposed as strategy to improve health outcomes for adolescents and young adults (AYA) after transition. To date, few studies have looked at factors that may influence transition readiness, a measure of disease-specific knowledge and self-management, in AYAs with sickle cell disease. This limits healthcare providers' and researchers' abilities to develop interventions specific to the unique needs of the population. This dissertation study examined the relationships between decision-making involvement, self-efficacy of sickle cell disease self-management, and transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare settings. This study found that higher levels of expressive behaviors such as sharing opinions and ideas in decision-making were associated with higher levels of AYA healthcare responsibility. Self-efficacy was positively associated with transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility. Future research interventions that increase AYA involvement in decision-making regarding disease management, increase self-efficacy, and safely reduce parent involvement may positively influence their capacity for self-management.

Development of a sickle cell disease readiness for transition assessment

2016 ◽  
Vol 28 (2) ◽  
pp. 193-201 ◽  
Author(s):  
Marsha Treadwell ◽  
Shirley Johnson ◽  
India Sisler ◽  
Matthew Bitsko ◽  
Ginny Gildengorin ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Intervention Program ◽  
Assessment Tool ◽  
Face Validity ◽  
Future Research ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: Instrumentation with established reliability and validity is not yet routinely utilized to assess readiness for transition from pediatric to adult care for youth and young adults with chronic conditions, including sickle cell disease (SCD). Objective: The aim of this study was to develop a SCD specific readiness for transition assessment tool. Subjects: Fifty-seven youths with SCD, ages 15–21 years, completed the initial version of the Transition Intervention Program – Readiness for Transition (TIP-RFT) assessment; 113 youths/young adults with SCD, ages 14–26 years, at two distinct sites of care completed a refined version of the TIP-RFT. Methods: The TIP-RFT was constructed based on a literature review, provider and patient consensus and assessed domains including knowledge and skills in medical self-care, social support, health benefits and independent living and educational/vocational skills. We used principal components factor analysis to evaluate TIP-RFT responses and assessed differences in TIP-RFT scores in relation to age, gender, sickle cell diagnosis and site of care. Results: The original TIP-RFT, which had demonstrated face validity, was reduced from 56 to 22 items. The revised instrument consisting of four subscales demonstrated good internal consistency reliability and construct validity. Conclusion: Our results support that the TIP-RFT is a valid and reliable tool for the assessment of transition readiness for youths with SCD. The TIP-RFT assessment can guide interventions to improve transition readiness and can provide a foundation for future research on other variables that might be associated with transition readiness.

Transition Navigator Intervention improves transition readiness to adult care for youth with Sickle Cell Disease

2021 ◽  
Author(s):  
Deepa Manwani ◽  
Maya Doyle ◽  
Lynn Davidson ◽  
Makeda Mallea ◽  
Ellen J. Silver ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness
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