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Influence of childhood scleroderma on physical function and quality of life
Eileen M Baildam1, Holly Ennis, Helen E Foster
1Alder Hey Children's NHS Foundation Trust, Liverpool, UK. Eileen.Baildam@alderhey.nhs.uk
Insights
Childhood scleroderma moderately impacts quality of life and physical function. This finding is encouraging despite potential disfigurement and debilitation from the condition.
Area of Science:
- Pediatric rheumatology
- Dermatology
- Quality of Life research
Background:
- Limited research exists on quality of life (QoL) in childhood scleroderma.
- Previous studies primarily focused on self-perception and skin lesion impact.
- This study addresses the need for a broader understanding of QoL and physical function in pediatric scleroderma.
Purpose of the Study:
- To investigate the influence of childhood scleroderma on physical function.
- To assess the overall quality of life in children diagnosed with scleroderma.
- To correlate these impacts with clinical and demographic factors.
Main Methods:
- A cross-sectional study involving 28 children with localized scleroderma or systemic sclerosis (SSc).
- Participants completed four validated measures: Child Health Assessment Questionnaire (CHAQ), Child Dermatology Life Quality Index (CDLQI), Child Quality of Life Questionnaire (CQOL), and Child Health Questionnaire (CHQ-PF50).
- Clinical and demographic data were collected by consultant pediatric rheumatologists.
Main Results:
- The median CHAQ score was 0.1, indicating minimal physical impairment.
- The median CDLQI score was 5, suggesting a moderate impact on skin-related quality of life.
- Family activity, measured by CHQ-PF50, showed moderate impairment with a median score of 83.
Conclusions:
- Childhood scleroderma has a moderate effect on physical function and quality of life.
- This finding is encouraging, considering the potential disfiguring and debilitating nature of the disease.
- While most children experienced moderate effects, a small subset reported greater impairment.
Objective:
there have been few studies of quality of life in childhood scleroderma and these focused predominantly on self-perception and the influence of skin lesions. Our cross-sectional study aimed to describe the influence of childhood scleroderma on physical function and quality of life in relation to clinical and demographic measures.
Methods:
children with either localized scleroderma or systemic sclerosis (SSc) attending pediatric rheumatology clinics, together with their parents or guardians, were asked to complete a set of 4 validated measures. Clinical and demographic data were provided by consultant pediatric rheumatologists.
Results:
in total, 28 children and their parents/guardians participated in the study (68% female, median age 13 yrs; 86% localized scleroderma, 14% SSc). The median Child Health Assessment Questionnaire (CHAQ) score was 0.1 (range 0-3, 0 indicating no impairment), the median Child Dermatology Life Quality Index (CDLQI) score was 5 (range 0-30, 0 indicating no impairment), and the median Child Quality of Life Questionnaire (CQOL) function score was 26 (range 0-105, 0 indicating no impairment). Family activity, measured by the Child Health Questionnaire (CHQ-PF50), was also moderately impaired by scleroderma, with a median score of 83 (0-100, 100 indicating no impairment).
Conclusion:
scleroderma had only a moderate effect on quality of life and physical function as measured by the 4 validated instruments. Although a small number of children reported greater impairment, this is an encouraging finding, given its potential disfiguring and debilitating effects.
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