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Sleep-disordered breathing in patients with myelomeningocele: the missed diagnosis
V G Kirk1, A Morielli, R T Brouillette
1Department of Pediatrics, Alberta Children's Hospital, University of Calgary, Canada.
Insights
Sleep-disordered breathing (SDB) affects many children with spina bifida/myelomeningocele (SB/MM). Underdiagnosis is common due to infrequent testing, potentially impacting patient outcomes.
Area of Science:
- Pediatric Neurology
- Sleep Medicine
- Spina Bifida Research
Background:
- Sleep-disordered breathing (SDB) is a concern in children with spina bifida/myelomeningocele (SB/MM).
- Previous data on SDB prevalence in SB/MM is limited.
- Current diagnostic practices for SDB in SB/MM are not well-established.
Purpose of the Study:
- To determine the current practices for identifying SDB in SB/MM patients across North America.
- To assess the prevalence of SDB in a large cohort of SB/MM patients.
- To investigate the relationship between SDB testing frequency and diagnosis rates.
Main Methods:
- A questionnaire-based survey was distributed to 212 spina bifida clinics in Canada and the United States.
- Data were collected on patient numbers, SDB testing rates, and diagnosed SDB cases.
- Clinic coordinators provided information on diagnostic capabilities and patient outcomes.
Main Results:
- Responses were received from 86 clinics (41%), representing 13,349 SB/MM patients.
- While 67% of centers had cardiorespiratory sleep study capabilities, only 7.5% of patients were tested for SDB.
- SDB was diagnosed in 3.1% of tested patients, with prevalence correlating directly with testing frequency.
Conclusions:
- A significant number of SB/MM patients may have undiagnosed moderate to severe SDB due to insufficient testing.
- Current SDB screening and diagnostic practices for SB/MM patients are inadequate.
- Increased vigilance and systematic screening for SDB in SB/MM populations are warranted.
Abstract:
Moderate to severe sleep-disordered breathing (SDB) was identified in 20% (17 of 83) of children with spina bifida/myelomeningocele (SB/MM) at the Montreal Children's Hospital. The prevalence of SDB in patients with SB/MM elsewhere has not been determined. To establish current practices for identifying SDB in patients with SB/MM, questionnaires were sent to the coordinators of the 212 spina-bifida clinics in Canada and in the United States. Eighty-six (41%) questionnaires were returned, representing data on 13 349 patients. Although 67% of the responding centers reported availability of cardiorespiratory sleep studies, only 996 (7.5%) patients with SB/MM had been tested and only 418 (3.1%) patients had been diagnosed with SDB. Across clinics, the prevalence of SDB was directly related to the frequency of testing. Of 380 deaths over the past 10 years, SDB and sudden unexplained death during sleep were identified as the cause of death in 49 (12.8%) and 34 (8.9%) patients, respectively. Moderate to severe SDB may not have been identified in a significant number of patients with SB/MM because they have not been tested.