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Predictors of Longitudinal Quality of Life in Juvenile Localized Scleroderma
Kaveh Ardalan1, Christina K Zigler2, Kathryn S Torok2
1Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
Insights
Extracutaneous manifestations and female sex predict lower quality of life (QoL) in children with localized scleroderma. However, QoL impact decreases over time since the initial visit.
Area of Science:
- Pediatric Dermatology
- Rheumatology
- Quality of Life Research
Background:
- Localized scleroderma significantly impacts children's quality of life (QoL).
- Predictors of this QoL impact in juvenile localized scleroderma (jLS) are not well understood.
- Identifying these predictors is crucial for targeted interventions.
Purpose of the Study:
- To identify predictors of QoL impact in patients with juvenile localized scleroderma.
- To analyze the relationship between disease characteristics and QoL outcomes.
- To inform clinical management and psychosocial support strategies.
Main Methods:
- Analysis of longitudinal data from a single-center cohort of jLS patients.
- Utilized hierarchical generalized linear modeling (HGLM) to account for nested data structures.
- Evaluated both time-variant and time-invariant predictors of QoL impact.
Main Results:
- The presence of extracutaneous manifestations (ECMs) and female sex were significant predictors of negative QoL impact (Children's Dermatology Life Quality Index score >1).
- Increased time since the initial patient visit was associated with a decreased likelihood of reporting negative QoL impact.
- Extracutaneous manifestations and sex were more predictive of QoL impact than cutaneous disease features.
Conclusions:
- Extracutaneous manifestations and sex are key factors influencing QoL in jLS.
- The protective effect of time since initial visit warrants further investigation.
- Understanding these predictors can help identify at-risk patients and tailor supportive care.
Objective:
Localized scleroderma can negatively affect children's quality of life (QoL), but predictors of impact have not been well described. We sought to identify predictors of QoL impact in juvenile localized scleroderma patients.
Methods:
We analyzed longitudinal data from a single-center cohort of juvenile localized scleroderma patients, using hierarchical generalized linear modeling (HGLM) to identify predictors of QoL impact. HGLM is useful for nested data and allows for evaluation of both time-variant and time-invariant predictors.
Results:
The number of extracutaneous manifestations (ECMs; e.g., joint contracture and hemifacial atrophy) and female sex predicted negative QoL impact, defined as a Children's Dermatology Life Quality Index score >1 (P = 0.019 for ECMs and P = 0.002 for female sex). As the time since the initial visit increased, the odds of reporting a negative QoL impact decreased (P < 0.001).
Conclusion:
Our results suggest that ECMs, sex, and time since initial visit are more predictive of QoL impact in localized scleroderma than cutaneous features. Further study is required to determine which ECMs have the most impact on QoL, which factors underlie sex differences in QoL in localized scleroderma, and why increasing the time since the initial visit appears to be protective. An improved understanding of predictors of QoL impact may allow for the identification of patients at risk of poorer outcomes and for the tailoring of treatment and psychosocial support.
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