Caregiver Knowledge of AAP Guidelines Improved OSA Outcomes in People With Down Syndrome

People with Down syndrome (DS) whose caretaker was aware of and followed the updated American Academy of Pediatrics (AAP) guidelines for screening for obstructive sleep apnea (OSA) had better OSA-specific outcomes, according to a new study published in the Journal of Intellectual Disability Research.

DS affects approximately 5.8 million people worldwide and puts those who are diagnosed with the chromosomal abnormality at greater risk for several medical conditions, OSA included. In 2011, the AAP started recommending that a baseline polysomnography be performed on children with DS before the child is 4 years old. This study aimed to evaluate the knowledge of the caregiver of OSA and its treatment options, as well as explore factors that could contribute to screening rates of OSA.

Caregivers of people with DS who were enrolled in the LuMind International Down Syndrome Community database were sent a survey between September and October 2019. The survey consisted of 49 questions that covered diagnosis of OSA, treatment options, and indications to perform the sleep studies. The survey included both single- and multiple-choice questions as well as open-ended questions. The responses were split based on birth year: those born 2011 or before and those born 2012 or after. These were chosen based on the publication year of the new AAP guidelines.

There were 724 caregivers that completed the survey, most of whom were parents (96.3%). Most of the caregivers were college graduates or had a higher education degree (81.1%), and were older than 45 years (59.1%). Half had a self-reported income of higher than $100,000.

The majority of the participants were from the United States (92.8%). Most of the participants with DS were younger than 18 years (67.1%) and 3.4% were older than 40 years. There was a median age of 12 years and there were more men in the study group (56.3%).

OSA was diagnosed by a medical professional in 84.3% of cases, with only 49.4% presenting OSA symptoms before diagnosis. The frequency of a diagnosis of OSA was higher in patients with caregivers who were aged less than 45 years (72.1%) compared with caregivers aged older (28.0%); diagnosis of OSA was also more frequent in patients with severe OSA (34.0%) compared with patients without severe OSA (20.9%).

The age that OSA was diagnosed varied by the age of caregivers. Caregivers who were younger than 45 years had 90% of their patients receive a diagnosis of OSA before they were aged 4 years. The most common diagnosis of sleep apnea was OSA at 69.0%, with 67.5% having moderate to severe OSA.

More than half of the caregivers were aware of the 2011 AAP guidelines (58.7%) that outlined OSA screening for children with DS. Caregivers were aware of the AAP guidelines in 72.7% of patients who had a diagnosis of OSA at 4 years or younger. A total of 76.2% of caregivers that did not know about the AAP guidelines had patients born before the AAP guidelines. Patients with DS whose caregivers were aware of the AAP guidelines had a higher percentage of patients who repeated an initial sleep study (75.8%).

The median age of diagnosis of OSA was lower after the introduction of the AAP guidelines (3 years) compared with the median age of diagnosis prior to the guidelines (10 years).

There were some limitations to this study. The responders were not from a previous sleep study sample or representative of the entire community of patients with DS. LuMind is a nonprofit organization that has members of an upper socioeconomic status and a community with highly educated individuals, which could have contributed to selection bias. There were no questions about cognitive or behavioral consequences of OSA. The small percentage of respondents from outside of the United States could have cross-cultural and resource availability differences that could have affected the responses.

The researchers concluded that a caregiver’s knowledge of OSA should improve to promote the AAP sleep recommendations. This could help the health and quality of life in caregivers and people with DS.

Reference

Gimenez S, Tapia E, Fortea J, et al. Caregiver knowledge of obstructive sleep apnoea in Down syndrome. J Intellect Disabil Res. Published online November 22, 2022. doi:10.1111/jir.12990