Transforming Transition from Pediatric to Adult Care in Sickle Cell Disease: Leveraging Technology to Enhance Patient Education and Engagement Open Access

Abstract

 

Sickle cell disease (SCD) has evolved from a childhood chronic illness to now a lifelong disease. As adolescents and young adults with SCD grow older, they tend to experience disease progression at a faster rate, which can lead to severe pain crises, increased risk of mortality, greater need for specialized care, and higher utilization of healthcare services (including more frequent hospital readmissions). Given the increased disease burden as youth age, health care transition (HCT) would help ensure adolescents are well equipped to integrate into adult-based health care. The Children’s Healthcare of Atlanta, Aflac Cancer, and Blood Disorders Center is home to the largest pediatric SCD program in the United States. Within CHOA, hematologists and psychosocial providers have developed the Adolescent to Adult Sickle Cell Disease Transition Program to help with the transition from pediatric- to adult-based disease care. Due to the existing education program being in-person teaching, there was a significant population that reside over two hours away from this major comprehensive center, making access to care an ongoing barrier. With social media and the use of digital technology increasing throughout the United States as well in global settings, especially among young adults, creating web-based, micro-learning tools to disseminate on platforms such as TokTok and YouTube will increase engagement and disease knowledge. Given the aforementioned technological advances, the Optimizing Sickle Cell Disease Transition Engagement through Culturally Responsive Age Appropriate and Technology Evolving Education (CREATE) study was designed to develop culturally responsive, age-appropriate, and technology-evolving education related to SCD and general life for emerging adults living with SCD. Within CREATE, this special study thesis aims to create one disease-based educational module to disseminate to EASCD. The module will be disseminated on websites and through social media platforms, accessible not only in Metro Atlanta but across the state of Georgia and in global countries. Technological advancement has made it possible to create web-based modules to ensure that emerging adults with sickle cell disease (EASCD) are equipped with appropriate multi-dimensional knowledge and skills needed to engage in and navigate the adult healthcare system.

Table of Contents

Chapter 1: Introduction 1

Background 1

Problem Statement 2

Purpose Statement 4

Specific Aims 5

Significance Statement 5

 

Chapter 2: Review of Literature 6

Overview of Sickle Cell Disease 6    

Sickle Cell Disease in Atlanta, GA 8

Transition from Pediatric-to Adult-based SCD Healthcare 10

Barriers to Transition from Pediatric-to Adult-based Healthcare 12

Use of Technology and Social Media For Patient Engagement 14

Reducing Barriers: The CREATE Study 18

 

Chapter 3: Methods 18                                                                                           

Project Design 18

Phase 0: Preliminary Content Development and Testing 20

Developing the TikTok Video 21

Developing the knowledge Assessment Quiz 22

Revisiting Existing Transition-related Materials 22

Chapter 4: Deliverables 23

           Source Educational Content: Overview of Pain/Medication Management 23

           Source Educational Content: Triggers & Signs 24   

           Source Educational Content: Treatment and Prevention of Pain 25

           TikTok Script 26

           TikTok Video 27

           Pre-and-Post Test Questions 27

 

Chapter 5: Discussion 28

           Summary of Main Thesis Deliverable 28

           Limitations 30

           Future Directions 31

 

Chapter 6: Implications 31

 

References 33

About this Master's Thesis

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School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Education, Health Health Sciences, Public Health
Keyword	Technology Public Health Education Transition Program Sickle Cell Disease
Committee Chair / Thesis Advisor	Ghada N. Farhat, Emory University Elna Saah, Children's Healthcare of Atlanta
Committee Members	Justin Williams, Children's Healthcare of Atlanta

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