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

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 patients with LS.

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

Tue, 12/13/2022 - 10:42

Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services.

Mon, 11/23/2020 - 14:33

Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma).

Wed, 01/23/2019 - 16:41