Exploring the impact of paediatric localized scleroderma on health-related quality of life: Focus groups with youth and caregivers.

Exploring the impact of paediatric localized scleroderma on health-related quality of life: Focus groups with youth and caregivers.:

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Exploring the impact of paediatric localized scleroderma on health-related quality of life: Focus groups with youth and caregivers.

Br J Dermatol. 2020 Jan 18;:

Authors: Zigler CK, Ardalan K, Hernandez A, Caliendo AE, Magee KE, Terry MA, Mann CM, Torok KS

Abstract

BACKGROUND: Paediatric localized scleroderma (LS) can negatively impact health-related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side effects from immunosuppressive treatment. Studies to date have rarely included qualitative data gathered directly from paediatric LS patients.

OBJECTIVES: To assess the impact of LS on HRQoL among affected youth and their caregivers using qualitative description.

METHODS: Youth with all subtypes of LS and their caregivers were purposively sampled to participate in age-appropriate focus groups (younger children, early adolescents, adolescents). Each group started with a drawing exercise followed by in-depth discussion of topics including: skin symptoms (e.g. itch, pain, tightness), functional impairment, physical appearance, family and peer relationships, and treatment burden. Focus groups were transcribed verbatim and co-coded, with adjudication of differentially applied codes. Study findings were triangulated via comparison to adult reports and published literature.

RESULTS: Eleven youth aged 9-15 years old and 16 caregivers participated in three focus groups each. Major identified areas of impact included uncomfortable skin symptoms, physical functioning limitations, extracutaneous manifestations, body image, bullying/teasing, unwanted questioning from others, and treatment side effects/burden.

CONCLUSIONS: This is the first qualitative study of HRQoL in LS to include all major LS subtypes. We identified domains of HRQoL impacted by LS, some of which replicate earlier findings and some which were novel. As impact also changed with developmental stage, our findings support the need for ongoing, formal evaluation of HRQoL in children and adolescents with LS.

PMID: 31955419 [PubMed - as supplied by publisher]