1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April 2020 List URL Address <a href="http://doi.org/10.1177/0883073819900463" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0883073819900463</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions Publisher An entity responsible for making the resource available Journal of Child Neurology Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource child neurology; family impact; patient-reported outcomes; pediatric palliative; quality of life; spinal muscular atrophy Creator An entity primarily responsible for making the resource Weaver M S; Hanna R; Hetzel S; Patterson K; Yuroff A; Sund S; Schultz M; Schroth M; Halanski M A Description An account of the resource BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory support, and novel pharmaceuticals. OBJECTIVES: To report on the quality of life and family experience for children with spinal muscular atrophy with attentiveness to patient- and proxy-concordance and to stratify quality of life reports by spinal muscular atrophy type and medical interventions. METHODS: A prospective, crossover survey study inclusive of 58 children (26 spinal muscular atrophy type I, 23 type II, 9 type III) and their family caregivers at a free-standing Midwestern children's hospital. Twenty-eight families completed the 25-item PedsQL 3.0 Neuromuscular Module. Forty-four participants completed the 36-item PedsQL Family Impact Module and 47 completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire. RESULTS: The PedsQL Family Impact Module demonstrated significant differences between spinal muscular atrophy types I and II in functioning domains including physical, emotional, social, and family relations (P < .03). Child self-report and proxy report surveys demonstrated significant differences between spinal muscular atrophy types in the communication domains (P < .003). Children self-reported their quality of life higher than proxy report of child quality of life. Gastrostomy tube (P = .001) and ventilation support (P = .029) impacted proxy-reported quality of life perspectives, whereas nusinersen use did not. Spinal surgery was associated with improved parental quality of life and family impact (P < .03). CONCLUSIONS: The measurement and monitoring of quality of life for children with spinal muscular atrophy and their families represents an implementable priority for care teams. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0883073819900463" target="_blank" rel="noreferrer noopener">10.1177/0883073819900463</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 April 2020 List child neurology family impact Halanski M A Hanna R Hetzel S Journal of Child Neurology Patient-reported Outcomes Patterson K pediatric palliative Quality Of Life Schroth M Schultz M Spinal Muscular Atrophy Sund S Weaver M S Yuroff A