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Updated: Aug 21, 2025
Multi-Modal Home Sleep Monitoring in Older Adults
Published on: January 26, 2019
The impact of polysomnograms and family-centred decision making in children with medical complexity
Natalie Jewitt1, Julia Orkin1,2,3, Eyal Cohen1,2,3
1Department of Paediatrics, University of Toronto, Toronto, Ontario.
Insights
Clinical management changes after polysomnograms (PSG) were common in medically complex children (CMC). However, families' goals of care were rarely discussed before the PSG, highlighting a need for shared decision-making.
Area of Science:
- Pediatric Sleep Medicine
- Complex Care Management
- Health Services Research
Background:
- Children with medical complexity (CMC) often undergo polysomnography (PSG) to diagnose sleep-related breathing disorders.
- The impact of PSG results on clinical management and alignment with family goals of care is not well understood.
- Shared decision-making is crucial in managing CMC, especially before invasive or resource-intensive procedures.
Purpose of the Study:
- To determine the rate of clinical management changes following PSG in CMC.
- To assess whether families' goals of care were discussed prior to PSG.
- To explore the relationship between PSG findings, clinical decisions, and family preferences.
Main Methods:
- Retrospective review of health records for CMC who underwent PSG between 2009-2015.
- Inclusion criteria focused on baseline PSGs for diagnostic purposes, excluding ventilation titration studies.
- Descriptive statistics were used to analyze demographics, diagnoses, interventions, and documentation of family wishes.
Main Results:
- Of 96 eligible CMC, 50% had significant sleep-related breathing disorders.
- Following PSG, 19% had surgery, 52% initiated respiratory technology, and 6% had both.
- Only 3% of families' wishes were documented prior to PSG, with some treatments deferred due to risk or misalignment with family goals.
Conclusions:
- A significant proportion of CMC experience changes in clinical management post-PSG.
- There is a substantial gap in documenting family goals of care before PSG in CMC.
- Implementing shared decision-making processes before PSG is recommended to align care with family values and optimize resource utilization.
Objectives:
To determine whether a change in clinical management (e.g., new tracheostomy or adenotonsillectomy) occurred following a polysomnogram (PSG) in children with medical complexity (CMC) and to explore whether families' goals of care (regarding results and treatment implications) were discussed prior to the completion of a PSG.
Methods:
All CMC enrolled in a complex care program at the Hospital for Sick Children, Canada, who underwent a baseline PSG from 2009 to 2015 were identified. Exclusion criteria included (1) PSGs for ventilation titration and (2) PSGs outside the study time frame. Health records were retrospectively reviewed to determine demographics, medical histories, families' wishes, PSG results, and their impact on clinical care. Descriptive statistics were used to summarize results.
Results:
Of 145 patients identified, 96 patients met inclusion criteria. Fifty (52%) were male. Median age was 3 years. Forty-eight (50%) were diagnosed with clinically significant (i.e., moderate to severe obstructive sleep apnea, central sleep apnea, and/or hypoventilation) sleep-related breathing disorders. Of those diagnosed, 9 (19%) had surgery, 25 (52%) underwent respiratory technology initiation, and 3 (6%) underwent both. In the remaining 11 (23%) patients, treatment was either considered too risky or did not align with the families' wishes. Only 3 of 96 patients had clear documentation of their families' wishes prior to PSG completion.
Conclusion:
Recognizing the burden of medical tests for both the child and the health care system, a process of shared-decision making that includes clarifying a family's wishes may be prudent prior to conducting a PSG.
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