scholarly journals Predictors of Longitudinal Quality of Life in Juvenile Localized Scleroderma

2017 ◽  
Vol 69 (7) ◽  
pp. 1082-1087 ◽  
Author(s):  
Kaveh Ardalan ◽  
Christina K. Zigler ◽  
Kathryn S. Torok
Keyword(s):  
Quality Of Life ◽  
Localized Scleroderma ◽  
Juvenile Localized Scleroderma

scholarly journals Health-related quality of life in children and adolescents with juvenile localized scleroderma

Rheumatology ◽  
2009 ◽  
Vol 48 (6) ◽  
pp. 670-672 ◽  
Author(s):  
N. M. Orzechowski ◽  
D. M. Davis ◽  
T. G. Mason ◽  
C. S. Crowson ◽  
A. M. Reed
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Localized Scleroderma ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Juvenile Localized Scleroderma

scholarly journals The importance of development standards for anchoring vignettes: an illustrative example from pediatric localized scleroderma quality of life

2020 ◽  
Vol 29 (12) ◽  
pp. 3263-3272
Author(s):  
Christina K. Zigler ◽  
Heidi Jacobe ◽  
Kaveh Ardalan ◽  
Theresa M. Coles ◽  
Suzane Lane ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Localized Scleroderma ◽  
Anchoring Vignettes

Health-related quality of life, optimism, and coping strategies in persons suffering from localized scleroderma

2013 ◽  
Vol 18 (6) ◽  
pp. 654-663 ◽  
Author(s):  
B. Szramka-Pawlak ◽  
A. Dańczak-Pazdrowska ◽  
T. Rzepa ◽  
A. Szewczyk ◽  
A. Sadowska-Przytocka ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Coping Strategies ◽  
Localized Scleroderma ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
And Coping

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

2020 ◽  
Vol 183 (4) ◽  
pp. 692-701 ◽  
Author(s):  
C.K. Zigler ◽  
K. Ardalan ◽  
A. Hernandez ◽  
A.E. Caliendo ◽  
K.E. Magee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Localized Scleroderma ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Psychometric properties of the Children’s Dermatology Life Quality Index in pediatric localized scleroderma

2018 ◽  
Vol 3 (2) ◽  
pp. 175-181 ◽  
Author(s):  
Kaveh Ardalan ◽  
Galen E Switzer ◽  
Christina K Zigler ◽  
Nicole M Hershey ◽  
Kathryn S Torok
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Life Quality ◽  
Localized Scleroderma ◽  
Skin Symptoms ◽  
Life Impact ◽  
Life Quality Index

Introduction: The Children’s Dermatology Life Quality Index has been used to measure quality of life in studies of pediatric localized scleroderma, which suggested only modest effects on quality of life. However, the Children’s Dermatology Life Quality Index psychometric performance has not been examined in localized scleroderma and it was validated in populations lacking localized scleroderma’s distinctive clinical features, possibly underestimating the quality of life impact. This study assessed psychometric properties of the Children’s Dermatology Life Quality Index in a cohort of pediatric localized scleroderma patients. Methods: Existing Children’s Dermatology Life Quality Index data from a large pediatric localized scleroderma cohort were analyzed. Children’s Dermatology Life Quality Index score distributions were examined and internal consistency was evaluated with Cronbach’s alpha for the entire Children’s Dermatology Life Quality Index and after deletion of individual items. Construct validity was assessed by calculating Spearman’s correlations between Children’s Dermatology Life Quality Index scores and disease severity/impact measures. Dimensionality was examined using exploratory factor analysis with sequential item elimination. Results: Children’s Dermatology Life Quality Index scores suggested modest adverse effects on quality of life. Internal consistency was adequate (Cronbach’s alpha = 0.727) but increased after eliminating items regarding friendships, sleep, and treatment burdens. Children’s Dermatology Life Quality Index scores were not associated with physician-scored disease severity measures but were moderately associated with patient/parent assessments of disease impact. Exploratory factor analysis yielded a three-factor solution encompassing functional limitations, psychosocial effects, and skin symptoms/treatment burden. Conclusion: The Children’s Dermatology Life Quality Index may capture functional and psychosocial domains of quality of life in localized scleroderma, but likely underestimates the quality of life impact given that it includes some items with limited relevance in localized scleroderma, incompletely explores skin symptoms and treatment burdens, and demonstrates limited construct validity. Further study to optimize quality of life measurement in pediatric localized scleroderma is warranted.

scholarly journals Influence of Childhood Scleroderma on Physical Function and Quality of Life

2010 ◽  
Vol 38 (1) ◽  
pp. 167-173 ◽  
Author(s):  
EILEEN M. BAILDAM ◽  
HOLLY ENNIS ◽  
HELEN E. FOSTER ◽  
LINDSAY SHAW ◽  
ALICE S.E. CHIENG ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Child Health ◽  
Physical Function ◽  
Demographic Data ◽  
Life Quality ◽  
Skin Lesions ◽  
Localized Scleroderma ◽  
Life Questionnaire ◽  
Cross Sectional

Objective.There have been few studies of quality of life in childhood scleroderma and these focused predominantly on self-perception and the influence of skin lesions. Our cross-sectional study aimed to describe the influence of childhood scleroderma on physical function and quality of life in relation to clinical and demographic measures.Methods.Children with either localized scleroderma or systemic sclerosis (SSc) attending pediatric rheumatology clinics, together with their parents or guardians, were asked to complete a set of 4 validated measures. Clinical and demographic data were provided by consultant pediatric rheumatologists.Results.In total, 28 children and their parents/guardians participated in the study (68% female, median age 13 yrs; 86% localized scleroderma, 14% SSc). The median Child Health Assessment Questionnaire (CHAQ) score was 0.1 (range 0–3, 0 indicating no impairment), the median Child Dermatology Life Quality Index (CDLQI) score was 5 (range 0–30, 0 indicating no impairment), and the median Child Quality of Life Questionnaire (CQOL) function score was 26 (range 0–105, 0 indicating no impairment). Family activity, measured by the Child Health Questionnaire (CHQ-PF50), was also moderately impaired by scleroderma, with a median score of 83 (0–100, 100 indicating no impairment).Conclusion.Scleroderma had only a moderate effect on quality of life and physical function as measured by the 4 validated instruments. Although a small number of children reported greater impairment, this is an encouraging finding, given its potential disfiguring and debilitating effects.

scholarly journals Associations between Disease Activity/Severity and Damage and Health-Related Quality of Life in Adult Patients with Localized Scleroderma—A Comparison of LoSCAT and Visual Analogue Scales

2020 ◽  
Vol 9 (3) ◽  
pp. 756 ◽  
Author(s):  
Anna Lis-Święty ◽  
Alina Skrzypek-Salamon ◽  
Irmina Ranosz-Janicka ◽  
Ligia Brzezińska-Wcisło
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Localized Scleroderma ◽  
Health Related Quality ◽  
Skin Damage ◽  
Visual Analogue Scales ◽  
Related Quality ◽  
Health Related ◽  
Analogue Scales

Localized scleroderma (LoS) is a chronic fibrosing disorder of the skin and, less commonly, subcutaneous tissues. As the disease causes subjective symptoms, cosmetic defects, and, at times, functional disability, subjects with LoS experience deterioration of their health-related quality of life (HRQoL). The influence of disease activity/severity and damage status on HRQoL measures in patients with LoS is scarcely known. Physician-reported measures (modified LoS skin severity index, LoS skin damage index, physician global assessments of the disease activity/severity and damage) and patient-derived measures (patient global assessments of the disease activity/severity and damage) were obtained in adult LoS patients. Their HRQoL was measured with Skindex-29 and Short Form-36. The patients’ assessments of disease activity/severity and damage in LoS differed from the assessments by the physicians. The patients’ predominant concerns centered on LoS-related damage, whereas the physicians’ concerns focused on features of disease activity. Visual analogue scales bore some relation to the HRQoL, and they seem to be important in a holistic approach to the patient and should not be omitted in LoS evaluation.

scholarly journals Quality of Life in Patients with Morphea: A Cross-Sectional Study and a Review of the Current Literature

2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Justyna Szczęch ◽  
Dominik Samotij ◽  
Kamila Jaworecka ◽  
Aleksandra Tobiasz ◽  
Adam Reich
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Life Quality ◽  
Localized Scleroderma ◽  
Cross Sectional ◽  
The Mean ◽  
Life Quality Index

Introduction. Morphea (or localized scleroderma) is an inflammatory, immune-mediated disease of unknown etiology. It is characterized by excessive collagen deposition that leads to hardening of the dermis, subcutaneous tissues, or both. Morphea is associated with cosmetic and functional impairment, which might affect the patients’ quality of life (QoL). Objective. The aim of the study was to evaluate QoL in patients suffering from morphea. Material and Methods. Sixty-five patients with morphea were recruited into this cross-sectional, prospective parallel study. QoL among adult patients was assessed with the Dermatology Life Quality Index (DLQI) and Euro-QoL-5D questionnaire; patients aged <17 years used the Children’s Dermatology Life Quality Index (CDLQI). The severity of morphea was assessed using the Localized Scleroderma Cutaneous Assessment Tool. The results of QoL and its association with disease severity were compared between patients with various morphea subtypes. Results. The mean DLQI scoring was 3.8±4.1 points and the CDLQI was 2.3±3.0. The mean value of Visual Analogue Scale thermometer (EQ VAS) was 66.9±17.5 points. The disease activity of morphea based on mLoSSI correlated significantly with QoL impairment according to the DLQI (R=0.41, p=0.001). No significant correlation was observed between morphea-induced damage and QoL (p=0.99). Conclusions. Evaluation of QoL in patients with morphea is still challenging due to lack of good assessment tools dedicated specifically for morphea patients. In general, QoL in morphea patients is significantly correlated with the disease activity, but not with disease-induced skin damage.

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