{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2022,11,9]],"date-time":"2022-11-09T05:51:30Z","timestamp":1667973090245},"reference-count":16,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2020,3,23]],"date-time":"2020-03-23T00:00:00Z","timestamp":1584921600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,3,16]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>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\u2019 goals of care (regarding results and treatment implications) were discussed prior to the completion of a PSG.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>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\u2019 wishes, PSG results, and their impact on clinical care. Descriptive statistics were used to summarize results.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>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\u2019 wishes. Only 3 of 96 patients had clear documentation of their families\u2019 wishes prior to PSG completion.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>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\u2019s wishes may be prudent prior to conducting a PSG.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/pch\/pxaa021","type":"journal-article","created":{"date-parts":[[2020,3,23]],"date-time":"2020-03-23T11:17:50Z","timestamp":1584962270000},"page":"114-119","source":"Crossref","is-referenced-by-count":0,"title":["The impact of polysomnograms and family-centred decision making in children with medical complexity"],"prefix":"10.1093","volume":"26","author":[{"given":"Natalie","family":"Jewitt","sequence":"first","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Orkin","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"},{"name":"Division of Paediatric Medicine, Hospital for Sick Children , Toronto, Ontario"},{"name":"Child Health Evaluative Sciences, Research Institute, Hospital for Sick Children , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eyal","family":"Cohen","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"},{"name":"Division of Paediatric Medicine, Hospital for Sick Children , Toronto, Ontario"},{"name":"Child Health Evaluative Sciences, Research Institute, Hospital for Sick Children , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Indra","family":"Narang","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"},{"name":"Division of Respiratory and Sleep Medicine, Hospital for Sick Children , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suhail","family":"Al-Saleh","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"},{"name":"Division of Respiratory and Sleep Medicine, Hospital for Sick Children , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Reshma","family":"Amin","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, University of Toronto , Toronto, Ontario"},{"name":"Child Health Evaluative Sciences, Research Institute, Hospital for Sick Children , Toronto, Ontario"},{"name":"Division of Respiratory and Sleep Medicine, Hospital for Sick Children , Toronto, Ontario"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2020,3,23]]},"reference":[{"issue":"11","key":"2022110815491743700_CIT0001","doi-asserted-by":"crossref","first-page":"750","DOI":"10.1002\/jhm.2633","article-title":"Long length of hospital stay in children with medical complexity","volume":"11","author":"Gold","year":"2016","journal-title":"J Hosp Med"},{"issue":"3","key":"2022110815491743700_CIT0002","doi-asserted-by":"crossref","first-page":"529","DOI":"10.1542\/peds.2010-0910","article-title":"Children with medical complexity: An emerging population for clinical and research initiatives","volume":"127","author":"Cohen","year":"2011","journal-title":"Pediatrics"},{"key":"2022110815491743700_CIT0003","volume-title":"The AASM manual for the scoring of sleep and associated events: Rules, terminology and technical specifications: version 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neuromuscular diseases","volume":"123","author":"Katz","year":"2009","journal-title":"Pediatrics"},{"issue":"12","key":"2022110815491743700_CIT0008","doi-asserted-by":"crossref","first-page":"1344","DOI":"10.1136\/jnnp.2006.108779","article-title":"Chiari malformation and sleep related breathing disorders","volume":"78","author":"Dauvilliers","year":"2007","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"4","key":"2022110815491743700_CIT0009","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1177\/0194599817746959","article-title":"Adenotonsillectomy for obstructive sleep apnea in children with complex chronic conditions","volume":"158","author":"Amin","year":"2018","journal-title":"Otolaryngol Head Neck Surg"},{"key":"2022110815491743700_CIT0010","author":"Provincial Council for Maternal and Child Health (PCMCH)"},{"issue":"25","key":"2022110815491743700_CIT0011","doi-asserted-by":"crossref","first-page":"2366","DOI":"10.1056\/NEJMoa1215881","article-title":"A randomized trial of adenotonsillectomy for childhood sleep apnea","volume":"368","author":"Marcus","year":"2013","journal-title":"N Engl J Med"},{"issue":"10","key":"2022110815491743700_CIT0012","doi-asserted-by":"crossref","first-page":"1023","DOI":"10.1002\/ppul.21469","article-title":"Descriptive analysis of central sleep apnea in childhood at a single center","volume":"46","author":"Kritzinger","year":"2011","journal-title":"Pediatr Pulmonol"},{"issue":"11","key":"2022110815491743700_CIT0013","doi-asserted-by":"crossref","first-page":"1020","DOI":"10.1001\/archpediatrics.2011.172","article-title":"A national profile of caregiver challenges among more medically complex children with special health care needs","volume":"165","author":"Kuo","year":"2011","journal-title":"Arch Pediatr Adolesc Med"},{"issue":"1","key":"2022110815491743700_CIT0014","doi-asserted-by":"crossref","first-page":"e20161581","DOI":"10.1542\/peds.2016-1581","article-title":"Families\u2019 priorities regarding hospital-to-home transitions for children with medical complexity","volume":"139","author":"Leyenaar","year":"2017","journal-title":"Pediatrics"},{"issue":"3","key":"2022110815491743700_CIT0015","doi-asserted-by":"crossref","first-page":"279","DOI":"10.1002\/ajmg.c.31526","article-title":"Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18","volume":"172","author":"Janvier","year":"2016","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"7","key":"2022110815491743700_CIT0016","doi-asserted-by":"crossref","first-page":"367","DOI":"10.1093\/pch\/19.7.367","article-title":"Paediatric sleep resources in Canada: The scope of the problem","volume":"19","author":"Katz","year":"2014","journal-title":"Paediatr Child Health"}],"container-title":["Paediatrics &amp; Child 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