Arthritis & Rheumatism, Volume 60,
October 2009 Abstract Supplement

The 2009 ACR/ARHP Annual Scientific Meeting
Philadelphia October 16-21, 2009.

Assessing the Impact of Childhood Scleroderma On Physical Function and Quality of Life

Baildam1,  EM, Ennis2,  Holly, Herrick3,  Ariane L., Richards4,  Helen L.

Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom,
University of Manchester, Manchester, United Kingdom,
University of Manchester, Manchester, UK, United Kingdom,
Mercy University Hospital, Cork, Ireland


There have been few studies of quality of life (QOL) and physical function in childhood scleroderma and these have focused predominantly on self-perception and the impact of skin lesions. Yet QOL issues are likely to be used in the future as part of a composite assessment to measure disease activity and estimate disease impact. This cross-sectional study aimed to describe QOL and physical function in childhood scleroderma in relation to their clinical and demographic profiles.


Children with either localised scleroderma or systemic sclerosis (SSc) attending paediatric rheumatology clinics, together with their parents or guardians, were asked to complete a set of three validated measures: the Child Health Questionnaire (CHAQ), Child Dermatology Life Quality Index (CDLQI) and Child Health Questionnaire (CHQ-PF50). Clinical and demographic data were provided by consultant paediatric rheumatologists.


28 children and their parents/guardians participated in the study. Of the 28 children, 24 (86%) had localised scleroderma and 4 (14%) had SSc. 68% were female and the median age was 13 years (range 5–17). Median CHAQ physical function score (0–3 scale) was 0.1, indicating only moderate impairment, although 4 (14%) reported scores >=1 (2 with localised trunk or limb lesions and 2 with SSc). Median pain VAS score (0–100 scale) was 15 indicating moderate pain with 5 (17%) reporting pain >= 15 (4 in children with localised trunk or limb lesions and 1 with SSc). There was a positive relationship between CHAQ scores and pain VAS scores (r=0.69, p<0.00). Median CDLQI score was 5, indicating moderate impairment in self-perception. Parental assessments on the CHQ-PF50 indicated that children with localised scleroderma had greater impairment in psychosocial domains than in physical domains, while the opposite was true for children with SSc. Lower self-esteem assessments were significantly associated with higher CHAQ function and pain scores (p=0.04 and p=0.03 respectively). Family activity was also impaired by scleroderma, with a median score of 83 (0–100, with 0 indicating greater impairment) and 13 children (46%) scoring <= 80.


Scleroderma had only a moderate impact on QOL and physical function as measured by the three validated instruments used. This is encouraging, given its potential disfiguring and debilitating nature, although a small number of children reported a greater degree of impairment.

Localised scleroderma had a more detrimental impact on psychosocial than on physical wellbeing, highlighting the importance of measuring both affective and physical outcomes.

A reduction in physical function was associated with impaired self-esteem.

To cite this abstract, please use the following information:
Baildam, EM, Ennis, Holly, Herrick, Ariane L., Richards, Helen L.; Assessing the Impact of Childhood Scleroderma On Physical Function and Quality of Life [abstract]. Arthritis Rheum 2009;60 Suppl 10 :1542
DOI: 10.1002/art.26616

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