Exploring the impact of paediatric localized scleroderma on health-related quality of life: Focus groups with youth and caregivers
British Journal of Dermatology Mar 08, 2020
Zigler CK, Ardalan K, Hernandez A, et al. - Utilizing qualitative description, researchers evaluated the impact of localized scleroderma (LS) on health-related quality of life (HRQoL) among affected youth and their caregivers. To engage in age-appropriate focus groups (younger children, early adolescents, adolescents), youth with all subtypes of LS and their caregivers were intentionally collected. Eleven youth (aged 9 to 16 years) and 16 caregivers partook in three focus groups each. Major areas of impact identified included uncomfortable skin symptoms, limitations of physical function, extracutaneous manifestations, body image, bullying and teasing, unwanted questioning from others, and treatment side-effects and burden. This is the first qualitative HRQoL analysis in LS which includes all major LS subtypes. Domains of HRQoL impacted by LS were identified, some of which replicate earlier findings and some of which were novel. The results support the need for ongoing, formal evaluation of HRQoL in children and adolescents with LS, as impact also changed with the developmental stage.
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