"It made all the difference": a qualitative study of parental experiences with pediatric obstructive sleep apnea detection.

STUDY OBJECTIVES: To assess parental experience of their child's obstructive sleep apnea (OSA) detection process and inform the development of interventions and health communication strategies to improve OSA detection. METHODS: Semistructured interviews were conducted with 30 parents of children (ages 3-14) who snored and were referred for an overnight polysomnogram (PSG). Parents (60.0% Black race, 93.3% mothers) described how their child was referred for PSG and their perceptions and feelings throughout the detection process. Parents also completed an OSA knowledge measure. Interview data were analyzed using a descriptive approach and thematic analysis was conducted using the NVivo 12 software system. RESULTS: Twenty-one themes were identified across 5 categories (first steps; PSG facilitators and barriers; health information; health care experiences; parent experiences). Respondents experienced multiple pathways to OSA detection, with more than half of referrals initiated by parental concerns (vs. screening efforts). Parents reported a willingness to take any necessary steps to help their child. Both barriers and facilitators to completing a PSG were described. Parents observed both nighttime and daytime symptoms related to OSA in their child but often did not connect the symptoms to each other until later in the process. Participants had varying degrees of OSA knowledge, with a mean knowledge score of 56% correct (range 10%-90% correct). CONCLUSIONS: Parental experiences highlight aspects of the health care system that are both effective and ineffective in detecting children with OSA. Implications include a need for strategies to promote timely detection and to provide parents with accurate information about pediatric OSA. CITATION: Honaker SM, Gopalkrishnan A, Brann M, Wiehe S, Clark AA, Chung A. "It made all the difference": a qualitative study of parental experiences ith pediatric obstructive sleep apnea detection. J Clin Sleep Med. 2022;18(8):1921-1931.

Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support.

BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is a rare but fatal risk that patients, parents, and professional societies clearly recommend discussing with patients and families. However, this conversation does not routinely happen. OBJECTIVES: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP. METHODS: A prospective before-and-after study of the effect of computerized decision support on delivery of SUDEP counseling. The intervention was a screening, alerting, education, and follow-up SUDEP module for an existing computerized decision support system (the Child Health Improvement through Computer Automation [CHICA]) in five urban pediatric primary care clinics. Families of children with epilepsy were contacted by telephone before and after implementation to assess if the clinician discussed SUDEP at their respective encounters. RESULTS: The CHICA-SUDEP module screened 7,154 children age 0 to 21 years for seizures over 7 months; 108 (1.5%) reported epilepsy. We interviewed 101 families after primary care encounters (75 before and 26 after implementation) over 9 months. After starting CHICA-SUDEP, the number of caregivers who reported discussing SUDEP with their child's clinician more than doubled from 21% (16/75) to 46% (12/26; p = 0.03), and when the parent recalled who brought up the topic, 80% of the time it was the clinician. The differences between timing and sampling methodologies of before and after intervention cohorts could have led to potential sampling and recall bias. CONCLUSION: Clinician-family discussions about SUDEP significantly increased in pediatric primary care clinics after introducing a systematic, computerized screening and decision support module. These tools demonstrate potential for increasing patient-centered education about SUDEP, as well as incorporating other guideline-recommended algorithms into primary and subspecialty cares. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov, NCT03502759.