先天性鱼鳞病患儿及其家属的生活质量——一项横断面研究

IF 0.2 Q4 DERMATOLOGY Indian Journal of Paediatric Dermatology Pub Date : 2022-07-01 DOI:10.4103/ijpd.ijpd_136_21
Priyanka Hemrajani, B. Sharath Kumar, Mona Sharma
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摘要

鱼鳞病是一种异质性的遗传性皮肤病,以干燥、角化过度和脱屑为特征。本研究的目的是评估鱼鳞病患者及其家属的生活质量。材料与方法:共纳入72例患者,60例患者完成研究。研究工具包括5 ~ 16岁儿童患者的“婴儿皮炎生活质量指数”和“儿童皮肤病生活质量指数”,以及家庭成员的“皮炎家庭影响问卷”(DFI)。结果:对60名儿童进行问卷调查。以寻常型鱼鳞病(46例)、板层型鱼鳞病(10例)、非大疱性鱼鳞样红皮病(3例)、大疱性鱼鳞样红皮病(1例)为主,男女比例为1:1.5。对寻常型鱼鳞病和板层型鱼鳞病的生活质量影响较大,分别为77.8%和66.6%。DFI平均评分为9.94±7.23。结论:本研究报告了儿童鱼鳞病患者及其家属的生活质量较差。需要为这种慢性皮肤病的患者及其直接照护者/家属提供社会心理和精神支持。
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Quality of life among pediatric patients and their families suffering from congenital ichthyosis - A cross-sectional study
Introduction: Ichthyosis are a heterogeneous group of hereditary skin disorders characterized by dryness, hyperkeratosis, and desquamation. The purpose of this study was to evaluate quality of life (QoL) of patients with ichthyosis and their families. Materials and Methods: A total of 72 patients were enrolled and 60 patients completed the study. The study instrument included Infants' Dermatitis Life Quality Index and Children's Dermatology Life Quality Index for pediatric patients (5–16 years) and Dermatitis Family Impact Questionnaire (DFI) for family members. Results: Questionnaires were completed in 60 children. The patients had predominantly ichthyosis vulgaris (n = 46), lamellar ichthyosis (n = 10), nonbullous ichthyosiform erythroderma (n = 3), and bullous ichthyosiform erythroderma (n = 1). Male: female ratio was 1:1.5. Large effect on QoL was seen in 77.8% and 66.6% of ichthyosis vulgaris and lamellar, ichthyosis, respectively. Mean score of DFI was 9.94 ± 7.23. Conclusion: The present study reports a poor QoL among pediatric patients suffering from ichthyosis and their families. Psychosocial and mental support is needed for patients and their immediate caregivers/families for this chronic skin disease.
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审稿时长
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