Sleep Health Matters for All: Wellness Intervention for the Pediatric Down Syndrome Population
Abstract
Down syndrome (DS) is the most prevalent chromosomal disorder in which an extra copy of chromosome-21 disrupts the development of intellectual abilities. Unique physical manifestations places children with DS at high risk for obstructive sleep apnea (OSA) in which repeated blockages of the upper airway cause difficulty breathing during sleep. 80% of children with DS are afflicted with OSA, and this increases incidences of nocturnal sudden cardiac arrest by 2.57-fold compared to the general population. Manifestations of OSA, such as cognitive impairment and cardiovascular disease, are common in the DS population. However, this often obscures the diagnosis. During May 2021, focus group discussions were facilitated with caregivers to assess current understandings about the severity of OSA. A series of interviews were conducted with pediatric healthcare providers to understand OSA education strategies. By synthesizing the qualitative data from this study, a pilot evidence-based health education program was facilitated in collaboration with Special Olympics in 2022. In 2023, health polices along with the impact of social determinants of health (SDH) was addressed by reviewing literature. In the future, patient data from the pediatric otolaryngology department at Ann & Robert H. Lurie Children’s Hospital of Chicago will be analyzed to further understand the impact of SDH. This project has been supported by Special Olympics and Northwestern Medicine. The purpose of this study is to empower families with children living with DS to proactively screen for OSA through improvements in health communication. Interdisciplinary education ensures that children with DS are effectively screened for OSA.
Faculty Sponsors
Dr. Cristina Godoy
Project Type
Event
Location
Alvin Sherman Library
Start Date
4-5-2023 12:00 PM
End Date
4-6-2023 4:00 PM
Sleep Health Matters for All: Wellness Intervention for the Pediatric Down Syndrome Population
Alvin Sherman Library
Down syndrome (DS) is the most prevalent chromosomal disorder in which an extra copy of chromosome-21 disrupts the development of intellectual abilities. Unique physical manifestations places children with DS at high risk for obstructive sleep apnea (OSA) in which repeated blockages of the upper airway cause difficulty breathing during sleep. 80% of children with DS are afflicted with OSA, and this increases incidences of nocturnal sudden cardiac arrest by 2.57-fold compared to the general population. Manifestations of OSA, such as cognitive impairment and cardiovascular disease, are common in the DS population. However, this often obscures the diagnosis. During May 2021, focus group discussions were facilitated with caregivers to assess current understandings about the severity of OSA. A series of interviews were conducted with pediatric healthcare providers to understand OSA education strategies. By synthesizing the qualitative data from this study, a pilot evidence-based health education program was facilitated in collaboration with Special Olympics in 2022. In 2023, health polices along with the impact of social determinants of health (SDH) was addressed by reviewing literature. In the future, patient data from the pediatric otolaryngology department at Ann & Robert H. Lurie Children’s Hospital of Chicago will be analyzed to further understand the impact of SDH. This project has been supported by Special Olympics and Northwestern Medicine. The purpose of this study is to empower families with children living with DS to proactively screen for OSA through improvements in health communication. Interdisciplinary education ensures that children with DS are effectively screened for OSA.
