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Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature

BACKGROUND: Many patient-reported outcome (PRO) on disease severity quality of life (QOL) have been developed for atopic dermatitis (AD) patients. However, none of them on the reliability and validity of the instruments was sufficient for their application in clinical studies. The objective of this...

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Autores principales: Li, Aihua, Zhang, Minlu, Yang, Yating, Zhang, Joshua, Xie, Xiaoping, Li, Xiaoxian, Zhang, Hui
Formato: Online Artículo Texto
Lenguaje:English
Publicado: AME Publishing Company 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9469158/
https://www.ncbi.nlm.nih.gov/pubmed/36111032
http://dx.doi.org/10.21037/atm-22-3164
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author Li, Aihua
Zhang, Minlu
Yang, Yating
Zhang, Joshua
Xie, Xiaoping
Li, Xiaoxian
Zhang, Hui
author_facet Li, Aihua
Zhang, Minlu
Yang, Yating
Zhang, Joshua
Xie, Xiaoping
Li, Xiaoxian
Zhang, Hui
author_sort Li, Aihua
collection PubMed
description BACKGROUND: Many patient-reported outcome (PRO) on disease severity quality of life (QOL) have been developed for atopic dermatitis (AD) patients. However, none of them on the reliability and validity of the instruments was sufficient for their application in clinical studies. The objective of this study is to identify and assess the quality of recently developed PROs for disease severity and QOL in English and Chinese in AD patients. METHODS: We conducted a systematic review of PROs for disease severity and QOL for AD from PubMed, Web of Science, PsycINFO and ERIC (English literatures), and CNKI and Wanfang Data (Chinese literatures) from September 2010 to December 2021 with string including “atopic dermatitis” and “scaling”. All studies were screened by 2 reviewers. After being removed duplications, the studies developed the instruments for the AD patients, were reported by patients, and assessing the disease severity or QOL were included. RESULTS: Twenty-six instruments were retrieved. Three single-item Numeric Rating Scale (NRS) and 8 multidimensional instruments assessing disease severity and 15 assessing QOL were found to be originally developed in English (n=23) or Chinese (n=3). After full assessment on the reliability and validity, 3 NRS and 9 multidimensional instruments were recommended. The 3 NRS were Peak Pruritus/Itch NRS, Skin Pain NRS and Sleep Disturbance (SD) NRS. The multidimensional instruments for disease severity included the Patient-Oriented Eczema Measure (POEM), the patient oriented-SCORAD (PO-SCORAD), and Atopic Dermatitis Symptom Score (ADSS), and the instruments for QOLs included Infant’s Dermatology Quality of Life Index (IDQOL), Children’s Dermatology Life Quality Index (CDLQI), Atopic Dermatitis Control Tool (ADCT), PROMIS(®) Itch Questionnaire Mood and Sleep (PIQ-MS), PROMIS-Sleep Disturbance (PROMIS-SD), and PROMIS-Sleep-Related Impairment (PROMIS-SRI) for QOL. However, none of the Chinese PROs either originally developed or adapted were fully validated. DISCUSSION: Single-item NRS is a complement to multidimensional PROs in assessing the disease severity of AD. Quality of these instruments vary greatly and only a few instruments that meet the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) standards are recommended. Therefore, standardization of PROs is essential for developing new instruments, and for adapting a PRO in other populations with different culture and languages.
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spelling pubmed-94691582022-09-14 Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature Li, Aihua Zhang, Minlu Yang, Yating Zhang, Joshua Xie, Xiaoping Li, Xiaoxian Zhang, Hui Ann Transl Med Review Article BACKGROUND: Many patient-reported outcome (PRO) on disease severity quality of life (QOL) have been developed for atopic dermatitis (AD) patients. However, none of them on the reliability and validity of the instruments was sufficient for their application in clinical studies. The objective of this study is to identify and assess the quality of recently developed PROs for disease severity and QOL in English and Chinese in AD patients. METHODS: We conducted a systematic review of PROs for disease severity and QOL for AD from PubMed, Web of Science, PsycINFO and ERIC (English literatures), and CNKI and Wanfang Data (Chinese literatures) from September 2010 to December 2021 with string including “atopic dermatitis” and “scaling”. All studies were screened by 2 reviewers. After being removed duplications, the studies developed the instruments for the AD patients, were reported by patients, and assessing the disease severity or QOL were included. RESULTS: Twenty-six instruments were retrieved. Three single-item Numeric Rating Scale (NRS) and 8 multidimensional instruments assessing disease severity and 15 assessing QOL were found to be originally developed in English (n=23) or Chinese (n=3). After full assessment on the reliability and validity, 3 NRS and 9 multidimensional instruments were recommended. The 3 NRS were Peak Pruritus/Itch NRS, Skin Pain NRS and Sleep Disturbance (SD) NRS. The multidimensional instruments for disease severity included the Patient-Oriented Eczema Measure (POEM), the patient oriented-SCORAD (PO-SCORAD), and Atopic Dermatitis Symptom Score (ADSS), and the instruments for QOLs included Infant’s Dermatology Quality of Life Index (IDQOL), Children’s Dermatology Life Quality Index (CDLQI), Atopic Dermatitis Control Tool (ADCT), PROMIS(®) Itch Questionnaire Mood and Sleep (PIQ-MS), PROMIS-Sleep Disturbance (PROMIS-SD), and PROMIS-Sleep-Related Impairment (PROMIS-SRI) for QOL. However, none of the Chinese PROs either originally developed or adapted were fully validated. DISCUSSION: Single-item NRS is a complement to multidimensional PROs in assessing the disease severity of AD. Quality of these instruments vary greatly and only a few instruments that meet the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) standards are recommended. Therefore, standardization of PROs is essential for developing new instruments, and for adapting a PRO in other populations with different culture and languages. AME Publishing Company 2022-08 /pmc/articles/PMC9469158/ /pubmed/36111032 http://dx.doi.org/10.21037/atm-22-3164 Text en 2022 Annals of Translational Medicine. All rights reserved. https://creativecommons.org/licenses/by-nc-nd/4.0/Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0 (https://creativecommons.org/licenses/by-nc-nd/4.0/) .
spellingShingle Review Article
Li, Aihua
Zhang, Minlu
Yang, Yating
Zhang, Joshua
Xie, Xiaoping
Li, Xiaoxian
Zhang, Hui
Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title_full Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title_fullStr Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title_full_unstemmed Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title_short Patient-reported outcome (PRO) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of English and Chinese literature
title_sort patient-reported outcome (pro) instruments for disease severity and quality of life in patients with atopic dermatitis: a systematic review of english and chinese literature
topic Review Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9469158/
https://www.ncbi.nlm.nih.gov/pubmed/36111032
http://dx.doi.org/10.21037/atm-22-3164
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