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

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.

2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Justyna Szczęch ◽  
Dominik Samotij ◽  
Kamila Jaworecka ◽  
Aleksandra Tobiasz ◽  
Adam Reich

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.


2005 ◽  
Vol 125 (4) ◽  
pp. 659-664 ◽  
Author(s):  
Yan Hongbo ◽  
Charles L. Thomas ◽  
Michael A. Harrison ◽  
M. Sam Salek ◽  
Andrew Y. Finlay

2012 ◽  
Vol 87 (5) ◽  
pp. 697-702 ◽  
Author(s):  
Magda Blessmann Weber ◽  
Daniel Lorenzini ◽  
Clarissa Prieto Herman Reinehr ◽  
Bárbara Lovato

BACKGROUND: Skin diseases cause negative impact on the emotional state, social relationships and daily activities, due to the stigma caused by the appearance of the lesions. OBJECTIVE: This study aimed to assess the quality of life of pediatric patients with skin diseases attending a dermatology service, compare the scores obtained among the dermatoses found in the sample and associate them to the variables, in addition to observing how the skin disease specifically affects quality of life. METHODS: Cross-sectional study, with patients between 5 and 16 years attending the Dermatology Service of the University of Health Sciences of Porto Alegre, Brazil, between July 2010 and February 2011. The data collection instruments were the Children's Dermatology Life Quality Index questionnaire and the AUEQI questionnaire. RESULTS: A total of 161 patients were interviewed, with mean age of 9,66 years. The main dermatoses were atopic dermatitis (29.8%), warts (13%) and molluscum contagiosum (7.5%). Chronic diseases (73.9%) were the most prevalent. The overall mean Children's Dermatology Life Quality Index score was 5.01 for chronic dermatoses and 2.07 for acute illnesses, indicating a compromised quality of life among chronically ill patients. The comparison between the scores obtained with the AUEQI scale and the Children's Dermatology Life Quality Index scores indicates that the overall quality of life is less affected than the specific quality of life related to the dermatosis. CONCLUSIONS: The data presented reinforce how important it is that the patients, their families and caregivers understand the symptoms, triggers and treatment of the skin disease in question. This information facilitates adherence to the treatment and justifies the conduct adopted by the dermatologist.


2015 ◽  
Vol 19 (6) ◽  
pp. 546-554 ◽  
Author(s):  
K. Heelan ◽  
S. L. Hitzig ◽  
S. Knowles ◽  
A. M. Drucker ◽  
N. Mittmann ◽  
...  

Background: Little is known about quality of life and work productivity in autoimmune bullous dermatoses (AIBDs). Objective: To determine the impact of AIBDs on quality of life and work productivity. Methods: An observational cross-sectional study took place between February and May 2013 at an AIBD tertiary referral centre. Ninety-four patients were included. All participants completed the Dermatology Life Quality Index and the Work Productivity and Activity Impairment–Specific Health Problem questionnaires. Results: Responders to treatment had less impairment ( P < .001) than nonresponders. Patients with severe AIBD had significantly more impairment that those with mild ( P < .001) and moderate ( P = .002) AIBD. Greater impairment was associated with higher percentage of work missed. Those with a higher Dermatology Life Quality Index score had greater work impairment and overall activity impairment ( P = .041, P = .024). Nonresponders had increased impairment while working ( P < .001), overall work impairment ( P < .001), and activity impairment ( P < .001). Severely affected patients had worse impairment in all Work Productivity and Activity Impairment Questionnaire domains. Conclusions: AIBD has the potential to be a large burden on ability to work and quality of life. Larger studies are needed to clarify how these domains change over time and whether or not they improve with treatment.


2004 ◽  
Vol 30 (4) ◽  
pp. 525-529 ◽  
Author(s):  
John S. Rhee ◽  
B. Alex Matthews ◽  
Marcy Neuburg ◽  
Timothy L. Smith ◽  
Mary Burzynski ◽  
...  

2020 ◽  
Vol 10 (2) ◽  
pp. 30-37
Author(s):  
E. A. Shatokhina ◽  
S. B. Potkin ◽  
P. G. Malkov ◽  
L. S. Kruglova ◽  
A. S. Polonskaya

Background. Multikinase inhibitors of angiogenesis are currently the most effective group of drugs in target therapy for cancer. They are associated with a high prevalence of a specific cutaneous adverse reaction, which manifests as a hand-foot skin reaction (HFSR). This side effect is quite prominent in the majority of patients, usually graded as II–III degree, which leads to the dose reduction and even discontinuation of the drug. The study objective is to evaluate clinical, histological and ultrasound characteristics of a HFSR associated with MKI treatment, and to assess the influence of a HFSR on patient’s quality of life. Materials and methods. The study included 46 patients with HFSR, who were previously treated with sorafenib or lenvatinib. Clinical characteristics of HFSR, including severity grading, were evaluated. We also performed ultrasound and histological examinations and assess the Dermatology Life Quality Index. Results. Grade III HFSR was in 5 (10.86 %) patients, grade II – in 25 (54.35 %), and grade I – in 16 (34.79 %). Dermatology Life Quality Index depended on the HFSR severity, with the mean value 24.5 ± 2.4. Pathomorphological examination revealed irregular epidermal proliferation with hypertrophic psoriasiform acanthosis, minimal keratinocyte vacuolization, few apoptotic figures, dyskeratosis, hyperkeratosis and microvessel dilation in the papillary dermis. Ultrasound examination showed increased vascularization in papillary and reticular dermis in affected skin areas, which was more prominent in patients with severe degrees of HFSR. The pronounced enhancement of vascularization was detected in fragmented hypoechogenic sites along the border of papillary and reticular dermis and in similar sites along the border of dermis and hypodermis. Conclusion. The use of multikinase inhibitors leads to pronounced changes not only in the surface layers of the skin, but also in the dermis and subcutaneous fat, which significantly worsens the quality of life of patients. This indicates the need to search for pathogenetically based methods of treatment of HFSR and create practical guidelines for supportive treatment of patients with HFSR taking multikinase inhibitors.


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