Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Title

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Creator

Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M

Publisher

Archives Of Disease In Childhood

Date

2014

Subject

PEDI Study; Metabolic; Neurodisability; Genetics

Description

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised 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 under-reporting 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, were 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 do not improve, symptom burden.
2014-08

Rights

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).

Type

Journal Article

Citation List Month

Backlog

Pages

754-762

Issue

8

Volume

99

Citation

Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M, “Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions,” Pediatric Palliative Care Library, accessed June 14, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14859.

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