In summary, our 20-year retrospective study has shown that there has been an exponential growth in the number of children receiving domiciliary LTMV with the majority of children having favorable outcomes. Our study represents a step towards developing a Canadian registry to design and implement programmatic change for this medically complex population to ensure best practice for these children as well as their families.

A direct relationship between the degree of cerebellar tonsillar herniation and obstructive sleep apnea was demonstrated. However, further prospective studies that include neurophysiological assessment are needed to further translate the central nervous system imaging findings to predict the presence of SDB.

Based on this long-term follow-up study, NiPPV use in infants appears to be a viable long-term ventilation strategy.

There was a high prevalence of SDB in this cohort of children with CKD. The PSG and validated sleep questionnaires yielded discordant results, reinforcing the limitations of diagnosing SDB in the CKD population based solely on sleep questionnaires.

Background: Approximately 70% of children diagnosed with a medulloblastoma will become long-term survivors. Medulloblastoma therapy frequently causes long-term morbidities in survivors, which places a considerable burden on parental caregivers.We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. Methods:We conducted a qualitative study using grounded theory thematic analysis.We used semi-structured parental caregiver interviews to explore family experiences, social circumstances, and family-reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada.Results: Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6 years (range: 1-9 years) at diagnosis, and were 9.5 years (range: 5-12 years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long-term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long-term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future.Conclusions: Parental caregivers of medulloblastoma survivors experience long-term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.

Study Objectives: Our aim was to identify clinical predictors associated with changes in settings for pediatric invasive and noninvasive positive airway pressure therapy, which could help inform the allocation of limited polysomnogram (PSG) resources. Methods: A retrospective review was conducted in children who underwent one or more PSGs for technology titration. Children were included if they were using continuous positive airway pressure (CPAP) therapy, bilevel positive airway pressure (BPAP) therapy, or invasive positive pressure ventilation (IPPV) the night of the PSG. The primary outcome measure for the study were predictors of change in settings during IPPV, CPAP, and BPAP titration studies. Results: During the study period, 274 children using CPAP, BPAP, or IPPV underwent one or more titration PSGs. The mean (standard deviation [SD]) age of the children at the time of the first titration PSG was 10.52 (5.11) y. Fifty percent (n = 136) of the study participants were male. Most patients underwent BPAP titration studies (n = 166), followed by CPAP (n = 83) and then IPPV (n = 25). A total of 623 technology titration PSGs were completed. Reason for respiratory technology, type of respiratory technology, and time between ventilation initiation and the PSG were significant predictors of a change in settings in the multivariable regression model. Conclusions: Children were more likely to have a change in their technology settings during a PSG if there was a shorter period of time from the original technology initiation, if they were using BPAP (as compared to CPAP or IPPV) and/or if they had a primary central nervous system or musculoskeletal diagnosis. Keywords: respiratory, polysomnogram, pediatric, positive airway pressure therapy Citation: Al-Saleh S, Sayal P, Stephens D, Florence J, Sayal A, Baker A, Syed F, Narang I, Amin R. Factors associated with changes in invasive and noninvasive positive airway pressure therapy settings during pediatric polysomnograms.