Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea.

BACKGROUND/OBJECTIVE: While positive airway pressure (PAP) is an efficacious intervention for the treatment of obstructive sleep apnea syndrome (OSAS) in children with Down syndrome (DS), implementation and consistent use can be difficult. Caregiver perspectives and experiences using PAP are described with the aim of informing clinical practice. METHODS: Qualitative semi-structured phone interviews were conducted with 40 caregivers (i.e., mothers) of children with DS and OSAS treated with PAP for at least 6 months. Content analysis was used to identify themes associated with adherence and non-adherence. RESULTS: Respondents indicated variability in caregiver experience with the adoption of PAP and observed benefits of PAP. Varied experiences were attributed to several themes including accessing supplies, interactions with the medical team and equipment company, and patients' unique needs and behaviors, including the child's willingness and ability to adapt to PAP, sensory sensitivities, keeping the mask on all night, and differences in daytime behavior. Many families reported that desensitization with a reward system and trust within the caregiver-patient relationship were helpful. Caregiver suggestions for improving PAP adherence for families of children with DS included improving communication with the medical team and medical equipment company, emphasizing patience, using visual supports, and social support and education for extended family. CONCLUSIONS: Although family experiences varied, several actionable strategies by both the medical team and families emerged for improving the experience of and adherence to PAP in children with DS.

Screening of EEG referrals by neurologists leads to improved healthcare resource utilization.

The objective of this study was to determine if screening by a neurologist of all non-neurologist electroencephalogram (EEG) referrals prior to approval reduces the number of inappropriate requests. This retrospective survey included 600 consecutive EEG requisitions referred to the Anaheim Kaiser Permanente Neurodiagnostic Laboratory to rule out epilepsy. Patients with established epilepsy referred for a repeat EEG for management issues were excluded. Three groups of EEG referrals were analyzed. Each group consisted of 200 EEGs (100 pediatric and 100 adult EEGs). The first group was referred directly by non-neurologists, the second group was referred by non-neurologists with scrutiny by a neurologist, and the third group was referred by a neurologist directly. In the pediatric group, the ratio of abnormal EEG vs normal EEG was 1:3.35 in the first group, 1:0.69 in the second group and 1:0.33 in the third group. In the adult group, the ratio of abnormal EEGs vs normal EEGs was 1:2.23 in the first group, 1:0.82 in the second group and 1:0.45 in the third group. In the combined pediatric and adult groups, the ratio of abnormal EEG vs normal EEG was 1:2.70 in the first group, 1:0.75 in the second group and 1:0.39 in the third group. There was a significant difference between the results of the EEGs ordered by non-neurologists directly versus non-neurologists with scrutiny (p=.334, chi-square test). Scrutiny by a neurologist of EEG referrals from non-neurologists led to a reduction in the number of normal EEG results. This suggests that inappropriate EEG requests for non-epileptic patients that yield normal EEG results are significantly reduced with scrutiny. This can help reduce the indiscriminate overuse of EEGs by non-neurologists thereby leading to better utilization of healthcare resources.