{"title":"慢性病儿童和青少年的生活质量：一项横断面研究。","authors":"Pauline Perreard, Sarah Castets, Karine Aouchiche, Delphine Bernoux, Daniele Bruno, Mathilde Cailliez, Stéphanie Clave, Marie-Edith Coste, Cécile De Leusse, Pauline Duvant, Florentine Garaix, Laetitia Gauche, Emeline Marquant, Céline Roman, Bertrand Roquelaure, Caroline Rousset Rouvière, Julia Vergier, Michel Tsimaratos, Julie Berbis, Alexandre Fabre, Rachel Reynaud","doi":"10.1016/j.arcped.2024.04.007","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>The aim of this study was to describe the quality of life (QoL) of children with a chronic illness treated in a tertiary multidisciplinary pediatric department in comparison with the general population.</p><p><strong>Study design: </strong>A cross-sectional study was conducted in the tertiary multidisciplinary (nephrology, hepatogastroenterology, endocrinology, diabetology, transplantation) pediatric department of Timone Hospital in Marseille, France. Patients 8-17 years of age with a chronic disease were included during regular follow-up appointments. Medical and sociodemographic variables were obtained from medical records. Self-reported QoL was assessed using the VSPA (Vécu et Santé Perçu de l'Adolescent) questionnaire and parent-reported QoL was assessed using the VSPA questionnaire for parents.</p><p><strong>Results: </strong>A total of 244 patients were included. Overall QoL did not differ significantly from that of the general population. Adolescent patients' self-reported QoL scores were lower than those of the general population in the domains of physical health and leisure, and parents reported QoL scores for adolescent patients lower than those of the general population for self-esteem and physical health. Adolescents' self-reported QoL scores were higher than in the general population for relationships with parents, healthcare professionals, and teachers as well as for school achievement. Parents also reported higher QoL scores in these areas for their children.</p><p><strong>Conclusion: </strong>Children and adolescents with a variety of chronic diseases had similar overall QoL scores to the general population but with different QoL profiles; their scores in some domains were higher than those of the general population.</p>","PeriodicalId":55477,"journal":{"name":"Archives De Pediatrie","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Quality of life of chronically ill children and adolescents: a cross-sectional study.\",\"authors\":\"Pauline Perreard, Sarah Castets, Karine Aouchiche, Delphine Bernoux, Daniele Bruno, Mathilde Cailliez, Stéphanie Clave, Marie-Edith Coste, Cécile De Leusse, Pauline Duvant, Florentine Garaix, Laetitia Gauche, Emeline Marquant, Céline Roman, Bertrand Roquelaure, Caroline Rousset Rouvière, Julia Vergier, Michel Tsimaratos, Julie Berbis, Alexandre Fabre, Rachel Reynaud\",\"doi\":\"10.1016/j.arcped.2024.04.007\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>The aim of this study was to describe the quality of life (QoL) of children with a chronic illness treated in a tertiary multidisciplinary pediatric department in comparison with the general population.</p><p><strong>Study design: </strong>A cross-sectional study was conducted in the tertiary multidisciplinary (nephrology, hepatogastroenterology, endocrinology, diabetology, transplantation) pediatric department of Timone Hospital in Marseille, France. Patients 8-17 years of age with a chronic disease were included during regular follow-up appointments. Medical and sociodemographic variables were obtained from medical records. Self-reported QoL was assessed using the VSPA (Vécu et Santé Perçu de l'Adolescent) questionnaire and parent-reported QoL was assessed using the VSPA questionnaire for parents.</p><p><strong>Results: </strong>A total of 244 patients were included. Overall QoL did not differ significantly from that of the general population. Adolescent patients' self-reported QoL scores were lower than those of the general population in the domains of physical health and leisure, and parents reported QoL scores for adolescent patients lower than those of the general population for self-esteem and physical health. Adolescents' self-reported QoL scores were higher than in the general population for relationships with parents, healthcare professionals, and teachers as well as for school achievement. 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引用次数: 0
摘要
研究目的本研究旨在描述在三级多学科儿科接受治疗的慢性病患儿的生活质量（QoL），并与普通人群进行比较：这项横断面研究在法国马赛 Timone 医院的三级多学科儿科（肾病学、肝胃肠病学、内分泌学、糖尿病学、移植学）进行。8至17岁的慢性病患者在定期复诊时被纳入其中。医疗和社会人口变量均来自医疗记录。自我报告的 QoL 采用 VSPA（Vécu et Santé Perçu de l'Adolescent）问卷进行评估，家长报告的 QoL 采用 VSPA 问卷进行评估：结果：共纳入 244 名患者。总体 QoL 与普通人群无显著差异。在身体健康和休闲方面，青少年患者自我报告的 QoL 分数低于普通人群，而在自尊和身体健康方面，家长报告的青少年患者 QoL 分数低于普通人群。在与父母、医护人员和教师的关系以及学习成绩方面，青少年自我报告的 QoL 分数高于普通人群。父母也报告说，他们的孩子在这些方面的 QoL 分数更高：结论：患有各种慢性疾病的儿童和青少年的总体 QoL 分数与普通人群相似，但 QoL 特征不同；他们在某些领域的分数高于普通人群。
Quality of life of chronically ill children and adolescents: a cross-sectional study.
Objective: The aim of this study was to describe the quality of life (QoL) of children with a chronic illness treated in a tertiary multidisciplinary pediatric department in comparison with the general population.
Study design: A cross-sectional study was conducted in the tertiary multidisciplinary (nephrology, hepatogastroenterology, endocrinology, diabetology, transplantation) pediatric department of Timone Hospital in Marseille, France. Patients 8-17 years of age with a chronic disease were included during regular follow-up appointments. Medical and sociodemographic variables were obtained from medical records. Self-reported QoL was assessed using the VSPA (Vécu et Santé Perçu de l'Adolescent) questionnaire and parent-reported QoL was assessed using the VSPA questionnaire for parents.
Results: A total of 244 patients were included. Overall QoL did not differ significantly from that of the general population. Adolescent patients' self-reported QoL scores were lower than those of the general population in the domains of physical health and leisure, and parents reported QoL scores for adolescent patients lower than those of the general population for self-esteem and physical health. Adolescents' self-reported QoL scores were higher than in the general population for relationships with parents, healthcare professionals, and teachers as well as for school achievement. Parents also reported higher QoL scores in these areas for their children.
Conclusion: Children and adolescents with a variety of chronic diseases had similar overall QoL scores to the general population but with different QoL profiles; their scores in some domains were higher than those of the general population.
期刊介绍：
Archives de Pédiatrie publishes in English original Research papers, Review articles, Short communications, Practice guidelines, Editorials and Letters in all fields relevant to pediatrics.
Eight issues of Archives de Pédiatrie are released annually, as well as supplementary and special editions to complete these regular issues.
All manuscripts submitted to the journal are subjected to peer review by international experts, and must:
Be written in excellent English, clear and easy to understand, precise and concise;
Bring new, interesting, valid information - and improve clinical care or guide future research;
Be solely the work of the author(s) stated;
Not have been previously published elsewhere and not be under consideration by another journal;
Be in accordance with the journal''s Guide for Authors'' instructions: manuscripts that fail to comply with these rules may be returned to the authors without being reviewed.
Under no circumstances does the journal guarantee publication before the editorial board makes its final decision.
Archives de Pédiatrie is the official publication of the French Society of Pediatrics.
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