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Charting the Territory : Symptoms and Functional Assessment in Children With Progressive, Non-Curable Conditions Steele, Rose; Siden, Harold; Cadell, Susan; Davies, Betty; Andrews, Gail; Feichtinger, Leanne; Singh, Mina
Abstract
Background: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialized care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities. Aim: To describe these children’s symptoms, as well as how the children’s condition affects them physically. Design: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families. Setting/participants: Seven tertiary care children’s hospitals in Canada, 2 in the USA. Families were eligible based on the child’s condition. A total of 275 children from 258 families participated. Results: The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of underreporting of children’s symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding, and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties, and constipation were more likely to occur. They also tended to have frequent and distressing symptoms and to need extensive mobility modifications, which in turn was associated with higher numbers of symptoms. Conclusions: These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or not, symptom burden.
Item Metadata
Title |
Charting the Territory : Symptoms and Functional Assessment in Children With Progressive, Non-Curable Conditions
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Creator | |
Publisher |
BMJ Publishing Group Limited
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Date Issued |
2014
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Description |
Background: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialized care to enhance their quality of life. Prevention and relief of
physical symptoms for these children needs to begin at diagnosis, yet, little is known about their
patterns of symptoms and functional abilities.
Aim: To describe these children’s symptoms, as well as how the children’s condition affects
them physically.
Design: Cross-sectional, baseline results from an observational, longitudinal study, Charting the
Territory, that followed 275 children and their families.
Setting/participants: Seven tertiary care children’s hospitals in Canada, 2 in the USA. Families
were eligible based on the child’s condition. A total of 275 children from 258 families
participated.
Results: The 3 most common symptoms in these children were pain, sleep problems, and
feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of
underreporting of children’s symptoms for clinicians compared with parents. Regardless of use
of associated medications, pain, feeding, and constipation symptoms were often frequent and
distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory
problems, pain, feeding difficulties, and constipation were more likely to occur. They also tended
to have frequent and distressing symptoms and to need extensive mobility modifications, which
in turn was associated with higher numbers of symptoms.
Conclusions: These children experience multiple symptoms that have been previously
documented individually, but not collectively. Effective interventions are needed to reduce their
symptom burden. Future longitudinal analyses will examine which disease-modifying
interventions improve, or not, symptom burden.
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Subject | |
Genre | |
Type | |
Language |
eng
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Date Available |
2018-01-18
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Provider |
Vancouver : University of British Columbia Library
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Rights |
Attribution-NonCommercial-NoDerivatives 4.0 International
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DOI |
10.14288/1.0363075
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URI | |
Affiliation | |
Citation |
Steele R, Siden H, Cadell S, Davis B, Andrews G, Feichtinger, L, Singh M. Charting the territory: Symptoms and functional assessment in children with progressive, non-curable conditions. Archives of Disease in Childhood. 2014;99:754–62.
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Publisher DOI |
10.1136/archdischild-2013-305246
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Peer Review Status |
Reviewed
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Scholarly Level |
Faculty
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Copyright Holder |
BMJ Publishing Group Limited
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Rights URI | |
Aggregated Source Repository |
DSpace
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Item Media
Item Citations and Data
Rights
Attribution-NonCommercial-NoDerivatives 4.0 International