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Predictors of family impact of juvenile localized scleroderma

Katia Milovanova1, Merna Adly2, Brendan C Lethebe2

  • 1Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada.

Pediatric Dermatology
|July 15, 2021
PubMed

Insights

Juvenile localized scleroderma (jLS) moderately impacts family quality of life. Patient

Area of Science:

  • Pediatric Rheumatology
  • Dermatology
  • Health Outcomes Research

Background:

  • Juvenile localized scleroderma (jLS) is a chronic autoimmune condition affecting children.
  • The impact of jLS on family functioning and quality of life is not fully understood.
  • Identifying factors influencing family impact is crucial for developing targeted support.

Purpose of the Study:

  • To quantify the effect of jLS on family quality of life.
  • To determine predictors of family impact in pediatric jLS patients.
  • To inform the creation of resources that improve family well-being in jLS.

Main Methods:

  • Retrospective cohort study involving pediatric jLS patients and their families.
  • Utilized five validated questionnaires: PedsQL-FIM, PedsQL-Generic, PedsQL-RM, CHAQ, and CDLQI.
  • Linear mixed-effects models analyzed relationships between family impact and clinical variables over time.

Main Results:

  • The median baseline family impact score (PedsQL-FIM) was 80.9.
  • Patient's general (PedsQL-Generic) and disease-specific (PedsQL-RM) health-related quality of life were significant predictors of family impact.
  • Methotrexate use showed a trend toward increased family impact; jLS subtype also influenced outcomes.

Conclusions:

  • jLS exerts a moderate but significant impact on family quality of life.
  • Patient's overall health status and specific jLS characteristics are key predictors of family burden.
  • Family-centered care approaches are essential for managing jLS and supporting affected families.
Abstract

Keywords:
childdermatologyfamilylocalizedquality of liferheumatologyscleroderma

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