A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care

Title

A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care

Creator

Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC

Publisher

Palliative Medicine

Date

2012

Subject

Child; Female; Humans; Male; Cohort Studies; Prevalence; Disease Progression; Multivariate Analysis; Poverty Areas; adolescent; Preschool; infant; retrospective studies; Palliative Care/statistics & numerical data; Disease Specific; Great Britain/epidemiology; Muscular Dystrophy; Duchenne/epidemiology/mortality; Neuromuscular Diseases/epidemiology/mortality; Referral and Consultation/trends; Spinal Muscular Atrophies of Childhood/epidemiology/mortality

Description

BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.

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

924-929

Issue

7

Volume

26

Citation

Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC, “A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care,” Pediatric Palliative Care Library, accessed September 23, 2021, https://pedpalascnetlibrary.omeka.net/items/show/11447.

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