ArticleOrphanet journal of rare diseases2024
Development and validation of parent-reported gastrointestinal health scale in MECP2 duplication syndrome.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed, 7 citations in OpenAlex.
- Adaptation and Validation of the Bahasa Version of the Diabetes Obstacles Questionnaire-Short Version Among Indonesians With Type 2 Diabetes Mellitus.The journal of nursing research : JNR · 2025Article
- A New Instrument to Define Parental Fear Regarding Feeding Their Children: A Reliability and Validity Study.Dysphagia · 2025Article
- Psychometric characteristics of the Chinese version of the Pregnancy Exercise Attitudes Scale (C-PEAS).BMC pregnancy and childbirth · 2024Article
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
BACKGROUND/
aimsWe aimed to develop a validated patient-reported Gastrointestinal Health Scale (GHS) specific to MECP2 Duplication Syndrome (MDS) to be used in clinical trials.
methodsMDS parents completed a Gastrointestinal Health Questionnaire (GHQ) to investigate the most relevant and important items associated with gastrointestinal problems in MECP2-related disorders. Item reduction was executed according to EORTC guidelines. We performed reliability and validity studies for the finalized scale.
resultsA total of 106 surveys were eligible for item reduction and validation processes. The initial 55 items were reduced to 38 items based on parent responses, expert opinion, and initial confirmatory factor analysis (CFA). The final MDS-specific GHS included 38 items and 7 factors that underwent further reliability and validity assessments. The power of the study was at least 0.982. The Cronbach's alphas of the instruments were General Health: 0.799, Eating-Chewing-Swallowing: 0.809, Reflux: 0.794, Motility: 0.762, Mood: 0.906, Medication: 0.595, Parenting: 0.942 and all items together: 0.928. The correlation coefficient between total and individual item scores ranged from 0.215 to 0.730. Because of the ordinal nature of the variables, the diagonal weighted least squares estimation (DWLS) method was used to execute the CFA and Structural Equation Modeling. The GHS had excellent model fit with the acceptable range of fit indices values.
conclusionsWe developed a parent-reported, reliable, and valid MDS-specific GHS. This scale can be utilized in clinical settings or as an outcome measure in translational and clinical research.
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