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

Abstract

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.

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

“…4 Furthermore, a psychometric evaluation of an existing HRQoL tool used in LS suggested that psychosocial effects like feeling embarrassed, experiencing teasing or bullying, or covering skin with clothing were important to this population, but incompletely assessed. 17 Additionally, our findings replicated and expanded on some of the major themes identified in the 2018 qualitative paper of Stasiulis et al 5 Complementarily to their work, we found that individuals with all LS subtypes were bothered by 'feeling different', and that this was influenced by the visibility of their skin involvement, social support (or lack thereof) and their developmental age. Furthermore, the treatment burden reported by our participants was remarkably high compared Table 5 Descriptions of common and distressing side-effects from treatment with systemic medications as per youth focus groups with children and adolescents diagnosed with localized scleroderma and their caregivers…”

“…Focus groups with youth and their caregivers were employed to encourage idea generation and to stimulate patients to share and respond to theirs, and others', viewpoints and experiences. Focus group discussion guides were designed using a combination of literature review (including HRQoL in paediatric and adult LS), an evaluation of the most frequently used HRQoL survey, 17 and brainstorming sessions with two clinical experts. While the field's established domains of HRQoL guided our line of inquiry, the novel descriptions and concepts we captured in focus group discussions allowed us to elaborate on and refine those domains.…”

Telemedicine virtual reality based skin image in children's dermatology medical system

“…On this basis, a real-time voice chat tool based on multipoint communication is realized, and multidistribution technology is used to realize a real multipoint voice subsystem. 21…”

A novel patient‐reported outcome for paediatric localized scleroderma: a qualitative assessment of content validity

“…An informal literature search of studies from 2000 to 2018 revealed 10 different PROMs were used by LS researchers to evaluate HRQoL (Table ), and to date, no qualitative studies have been performed to evaluate content validity evidence in this population. Furthermore, poor results have been found in quantitative psychometric studies . It is not surprising to clinicians that existing surveys, which focus primarily on skin symptoms, perform inadequately in this population, as patients with LS tend to experience musculoskeletal issues or extracutaneous manifestations in addition to skin involvement .…”

“…Furthermore, poor results have been found in quantitative psychometric studies. 16 It is not surprising to clinicians that existing surveys, which focus primarily on skin symptoms, perform inadequately in this population, as patients with LS tend to experience musculoskeletal issues or extracutaneous manifestations in addition to skin involvement. 17 These areas of impact make the experience of having paediatric LS a unique one that has only recently been qualitatively described in the literature in Zigler et al (submitted) and Stasiulis et al 18 Building on formative qualitative work (Zigler et al, submitted), we developed a set of items that captured important areas of HRQoL impact in children and adolescents with LS.…”