{"title":"多发性硬化症患儿治疗管理依从性量表的开发和心理测量学评估。","authors":"Didem Yüksel , Figen Yardimci","doi":"10.1016/j.msard.2024.106162","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><div>Pediatric multiple sclerosis (pMS) is a chronic inflammatory, demyelinating, and neurodegenerative disease affecting the central nervous system in children and adolescents The aim of this correlational, comparative study was to develop an assessment scale for adherence to treatment management in pMS.</div></div><div><h3>Methods</h3><div>Two measurement tools were used to develop a scientifically sound tool to assess adherence in pediatric patients (12–18 years) diagnosed with multiple sclerosis (MS). Cases of pMS (<em>n</em> = 120) in 7 hospitals in Turkey were included between August 2021-February 2022. The tools were a \"Sociodemographic and Disease-Related Information\" and a newly developed \"Treatment Management Adherence Scale for Children with Multiple Sclerosis”. The form and questionnaire were completed by the children through online using the Zoom platform in approximately 10 min. The questionnaire on adherence contains 16 items related to the disease and treatment, scored in a 5-point Likert type. Face validity was established by pretesting with 20 children, and construct validity was established using the statistical methods of exploratory factor analysis and confirmatory factor analysis. For the reliability of the scale, Cronbach's Alpha and omega coefficients, item test correlation values, split-half, test-retest techniques were used.</div></div><div><h3>Results</h3><div>There were 120 eligible patients, 71.2 % girls, with mean age (±SD) 13,6 ± 2,2 years at disease onset and 15,7 ± 1,5 at the time of the study, all under disease-modifying therapy. The sample size and items were sufficient to conduct a factor analysis. The Cronbach's Alpha and Omega value was 0.75, indicating participants’ opinions were consistent across items. The mean content validity index was 0.93, showing the scale represented the measured data, and the exploratory factor analysis showed the scale measures adherence in 55 % of patients (desired figures: >0.80 and 40–60 % respectively). The 16 items of the questionnaire were grouped into 4 dimensions. These dimensions were termed 'physiological', 'self-concept', 'role function' and 'interdependence', in line with different styles of adaptation. The total score can be between 16 and 80, with higher scores indicating strong adherence to treatment. The mean total score of 54,3 ± 9,53 (min=31, max= 75) in this study was in the “moderate adherence” range.</div></div><div><h3>Conclusions</h3><div>This new scale is the first to assess adherence in pMS. The study supports its validity, reliability, and likelihood to address adjustment issues in children and adolescents with MS accurately and can be recommended for clinical use.</div></div>","PeriodicalId":18958,"journal":{"name":"Multiple sclerosis and related disorders","volume":"92 ","pages":"Article 106162"},"PeriodicalIF":2.9000,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Development and psychometric evaluation of the treatment management adherence scale for children with multiple sclerosis\",\"authors\":\"Didem Yüksel , Figen Yardimci\",\"doi\":\"10.1016/j.msard.2024.106162\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><div>Pediatric multiple sclerosis (pMS) is a chronic inflammatory, demyelinating, and neurodegenerative disease affecting the central nervous system in children and adolescents The aim of this correlational, comparative study was to develop an assessment scale for adherence to treatment management in pMS.</div></div><div><h3>Methods</h3><div>Two measurement tools were used to develop a scientifically sound tool to assess adherence in pediatric patients (12–18 years) diagnosed with multiple sclerosis (MS). Cases of pMS (<em>n</em> = 120) in 7 hospitals in Turkey were included between August 2021-February 2022. The tools were a \\\"Sociodemographic and Disease-Related Information\\\" and a newly developed \\\"Treatment Management Adherence Scale for Children with Multiple Sclerosis”. The form and questionnaire were completed by the children through online using the Zoom platform in approximately 10 min. The questionnaire on adherence contains 16 items related to the disease and treatment, scored in a 5-point Likert type. Face validity was established by pretesting with 20 children, and construct validity was established using the statistical methods of exploratory factor analysis and confirmatory factor analysis. For the reliability of the scale, Cronbach's Alpha and omega coefficients, item test correlation values, split-half, test-retest techniques were used.</div></div><div><h3>Results</h3><div>There were 120 eligible patients, 71.2 % girls, with mean age (±SD) 13,6 ± 2,2 years at disease onset and 15,7 ± 1,5 at the time of the study, all under disease-modifying therapy. The sample size and items were sufficient to conduct a factor analysis. The Cronbach's Alpha and Omega value was 0.75, indicating participants’ opinions were consistent across items. The mean content validity index was 0.93, showing the scale represented the measured data, and the exploratory factor analysis showed the scale measures adherence in 55 % of patients (desired figures: >0.80 and 40–60 % respectively). The 16 items of the questionnaire were grouped into 4 dimensions. These dimensions were termed 'physiological', 'self-concept', 'role function' and 'interdependence', in line with different styles of adaptation. The total score can be between 16 and 80, with higher scores indicating strong adherence to treatment. The mean total score of 54,3 ± 9,53 (min=31, max= 75) in this study was in the “moderate adherence” range.</div></div><div><h3>Conclusions</h3><div>This new scale is the first to assess adherence in pMS. The study supports its validity, reliability, and likelihood to address adjustment issues in children and adolescents with MS accurately and can be recommended for clinical use.</div></div>\",\"PeriodicalId\":18958,\"journal\":{\"name\":\"Multiple sclerosis and related disorders\",\"volume\":\"92 \",\"pages\":\"Article 106162\"},\"PeriodicalIF\":2.9000,\"publicationDate\":\"2024-11-08\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Multiple sclerosis and related disorders\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S2211034824007387\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Multiple sclerosis and related disorders","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2211034824007387","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Development and psychometric evaluation of the treatment management adherence scale for children with multiple sclerosis
Background
Pediatric multiple sclerosis (pMS) is a chronic inflammatory, demyelinating, and neurodegenerative disease affecting the central nervous system in children and adolescents The aim of this correlational, comparative study was to develop an assessment scale for adherence to treatment management in pMS.
Methods
Two measurement tools were used to develop a scientifically sound tool to assess adherence in pediatric patients (12–18 years) diagnosed with multiple sclerosis (MS). Cases of pMS (n = 120) in 7 hospitals in Turkey were included between August 2021-February 2022. The tools were a "Sociodemographic and Disease-Related Information" and a newly developed "Treatment Management Adherence Scale for Children with Multiple Sclerosis”. The form and questionnaire were completed by the children through online using the Zoom platform in approximately 10 min. The questionnaire on adherence contains 16 items related to the disease and treatment, scored in a 5-point Likert type. Face validity was established by pretesting with 20 children, and construct validity was established using the statistical methods of exploratory factor analysis and confirmatory factor analysis. For the reliability of the scale, Cronbach's Alpha and omega coefficients, item test correlation values, split-half, test-retest techniques were used.
Results
There were 120 eligible patients, 71.2 % girls, with mean age (±SD) 13,6 ± 2,2 years at disease onset and 15,7 ± 1,5 at the time of the study, all under disease-modifying therapy. The sample size and items were sufficient to conduct a factor analysis. The Cronbach's Alpha and Omega value was 0.75, indicating participants’ opinions were consistent across items. The mean content validity index was 0.93, showing the scale represented the measured data, and the exploratory factor analysis showed the scale measures adherence in 55 % of patients (desired figures: >0.80 and 40–60 % respectively). The 16 items of the questionnaire were grouped into 4 dimensions. These dimensions were termed 'physiological', 'self-concept', 'role function' and 'interdependence', in line with different styles of adaptation. The total score can be between 16 and 80, with higher scores indicating strong adherence to treatment. The mean total score of 54,3 ± 9,53 (min=31, max= 75) in this study was in the “moderate adherence” range.
Conclusions
This new scale is the first to assess adherence in pMS. The study supports its validity, reliability, and likelihood to address adjustment issues in children and adolescents with MS accurately and can be recommended for clinical use.
期刊介绍:
Multiple Sclerosis is an area of ever expanding research and escalating publications. Multiple Sclerosis and Related Disorders is a wide ranging international journal supported by key researchers from all neuroscience domains that focus on MS and associated disease of the central nervous system. The primary aim of this new journal is the rapid publication of high quality original research in the field. Important secondary aims will be timely updates and editorials on important scientific and clinical care advances, controversies in the field, and invited opinion articles from current thought leaders on topical issues. One section of the journal will focus on teaching, written to enhance the practice of community and academic neurologists involved in the care of MS patients. Summaries of key articles written for a lay audience will be provided as an on-line resource.
A team of four chief editors is supported by leading section editors who will commission and appraise original and review articles concerning: clinical neurology, neuroimaging, neuropathology, neuroepidemiology, therapeutics, genetics / transcriptomics, experimental models, neuroimmunology, biomarkers, neuropsychology, neurorehabilitation, measurement scales, teaching, neuroethics and lay communication.