Greta Arias-Merino, Juan Benito-Lozano, Renata Linertová, Verónica Alonso-Ferreira
{"title":"大疱性表皮松解症的健康相关生活质量评估：一项范围审查方案","authors":"Greta Arias-Merino, Juan Benito-Lozano, Renata Linertová, Verónica Alonso-Ferreira","doi":"10.1186/s13643-025-02918-9","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Epidermolysis bullosa (EB) is a group of rare congenital inherited skin diseases. Evaluation of health-related quality of life (HRQoL) is key to understanding the psychosocial and emotional impact on patients and their relatives or carers. The BUR-EB project aims at ascertaining the socio-economic burden of the disease, including its impact on costs and HRQoL. The aim of this scoping review is to identify which instruments or questionnaires are being used to evaluate the HRQoL of patients with EB and their relatives and carers.</p><p><strong>Methods: </strong>A scoping review will be conducted to ascertain the HRQoL of EB patients, their family circle and caregivers over the past 12 years. The wide-ranging review question is as follows: \"Which measurement tools are available for evaluation of HRQoL in EB?\" A search will be made in the MEDLINE, WOS and Scopus databases, and the Joanna Briggs Institute methodology will be applied. The data and findings will be shown in tables and in narrative form, in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).</p><p><strong>Discussion: </strong>This scoping review will provide an overview of evidence on the use of HRQoL instruments, both in patients with EB and in relatives and carers. The results of this scoping review will offer a guidance to the researchers to measure the health and well-being of EB patients.</p>","PeriodicalId":22162,"journal":{"name":"Systematic Reviews","volume":"14 1","pages":"159"},"PeriodicalIF":3.9000,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12317451/pdf/","citationCount":"0","resultStr":"{\"title\":\"Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol.\",\"authors\":\"Greta Arias-Merino, Juan Benito-Lozano, Renata Linertová, Verónica Alonso-Ferreira\",\"doi\":\"10.1186/s13643-025-02918-9\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Epidermolysis bullosa (EB) is a group of rare congenital inherited skin diseases. Evaluation of health-related quality of life (HRQoL) is key to understanding the psychosocial and emotional impact on patients and their relatives or carers. The BUR-EB project aims at ascertaining the socio-economic burden of the disease, including its impact on costs and HRQoL. The aim of this scoping review is to identify which instruments or questionnaires are being used to evaluate the HRQoL of patients with EB and their relatives and carers.</p><p><strong>Methods: </strong>A scoping review will be conducted to ascertain the HRQoL of EB patients, their family circle and caregivers over the past 12 years. The wide-ranging review question is as follows: \\\"Which measurement tools are available for evaluation of HRQoL in EB?\\\" A search will be made in the MEDLINE, WOS and Scopus databases, and the Joanna Briggs Institute methodology will be applied. The data and findings will be shown in tables and in narrative form, in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).</p><p><strong>Discussion: </strong>This scoping review will provide an overview of evidence on the use of HRQoL instruments, both in patients with EB and in relatives and carers. The results of this scoping review will offer a guidance to the researchers to measure the health and well-being of EB patients.</p>\",\"PeriodicalId\":22162,\"journal\":{\"name\":\"Systematic Reviews\",\"volume\":\"14 1\",\"pages\":\"159\"},\"PeriodicalIF\":3.9000,\"publicationDate\":\"2025-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12317451/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Systematic Reviews\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s13643-025-02918-9\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"MEDICINE, GENERAL & INTERNAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Systematic Reviews","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s13643-025-02918-9","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol.
Background: Epidermolysis bullosa (EB) is a group of rare congenital inherited skin diseases. Evaluation of health-related quality of life (HRQoL) is key to understanding the psychosocial and emotional impact on patients and their relatives or carers. The BUR-EB project aims at ascertaining the socio-economic burden of the disease, including its impact on costs and HRQoL. The aim of this scoping review is to identify which instruments or questionnaires are being used to evaluate the HRQoL of patients with EB and their relatives and carers.
Methods: A scoping review will be conducted to ascertain the HRQoL of EB patients, their family circle and caregivers over the past 12 years. The wide-ranging review question is as follows: "Which measurement tools are available for evaluation of HRQoL in EB?" A search will be made in the MEDLINE, WOS and Scopus databases, and the Joanna Briggs Institute methodology will be applied. The data and findings will be shown in tables and in narrative form, in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).
Discussion: This scoping review will provide an overview of evidence on the use of HRQoL instruments, both in patients with EB and in relatives and carers. The results of this scoping review will offer a guidance to the researchers to measure the health and well-being of EB patients.
期刊介绍：
Systematic Reviews encompasses all aspects of the design, conduct and reporting of systematic reviews. The journal publishes high quality systematic review products including systematic review protocols, systematic reviews related to a very broad definition of health, rapid reviews, updates of already completed systematic reviews, and methods research related to the science of systematic reviews, such as decision modelling. At this time Systematic Reviews does not accept reviews of in vitro studies. The journal also aims to ensure that the results of all well-conducted systematic reviews are published, regardless of their outcome.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
