Yaser M Al Malik, Awad S Alharbi, Mohammed A Alfurayh, Abdulaziz A Aldalaan, Abdulazeez M Alzailaie, Eid D Alanazi, Ahmad A Abulaban, Seraj O Makkawi, Asma A Alanazi
{"title":"沙特阿拉伯的多发性硬化症患者想知道他们的预后吗？一项全国性的横断面研究。","authors":"Yaser M Al Malik, Awad S Alharbi, Mohammed A Alfurayh, Abdulaziz A Aldalaan, Abdulazeez M Alzailaie, Eid D Alanazi, Ahmad A Abulaban, Seraj O Makkawi, Asma A Alanazi","doi":"10.17712/nsj.2025.2.20240094","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>To investigate whether Persons with MS (pwMS) in Saudi Arabia want to discuss their long-term prognosis (LTP) and the factors influencing this decision using a self-administered online questionnaire.</p><p><strong>Methods: </strong>In this cross-sectional study, an online questionnaire was distributed from December 2022 to July 2023 across Saudi Arabia to determine pwMS interest in discussing their LTP. Participants included patients over 18 years, of any gender, diagnosed with MS. A nonprobability convenience sampling technique was used, with questionnaires sent through MS organizations and channels.</p><p><strong>Results: </strong>Almost two-thirds (66-68%) of the 375 respondents reported that their LTP had never been discussed during neurologist appointments and expressed uncertainty about it. Additionally, 23.5% noted discrepancies in information provided by different neurologists. Most (81.6%) expressed a desire for a prognostic tool at diagnosis. In this study, MS patients' desire to learn about a tool for assessing long-term prognosis was significantly associated with age, education level (<i>p</i><0.001), and gender (<i>p</i>=0.02). A higher percentage of women (65.7%) showed interest in learning about the tool compared to men (34.3%).</p><p><strong>Conclusion: </strong>While more than half of pwMS are curious about their prognosis, only about one-third have optimal discussions about LTP with neurologists. Many desire information on prognostic tools. Further research is needed to assess patients' knowledge of their prognosis and improve communication with physicians.</p>","PeriodicalId":19284,"journal":{"name":"Neurosciences","volume":"30 2","pages":"108-116"},"PeriodicalIF":1.2000,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11977590/pdf/","citationCount":"0","resultStr":"{\"title\":\"Do people with multiple sclerosis in Saudi Arabia want to know their prognosis? A cross-sectional nationwide study.\",\"authors\":\"Yaser M Al Malik, Awad S Alharbi, Mohammed A Alfurayh, Abdulaziz A Aldalaan, Abdulazeez M Alzailaie, Eid D Alanazi, Ahmad A Abulaban, Seraj O Makkawi, Asma A Alanazi\",\"doi\":\"10.17712/nsj.2025.2.20240094\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>To investigate whether Persons with MS (pwMS) in Saudi Arabia want to discuss their long-term prognosis (LTP) and the factors influencing this decision using a self-administered online questionnaire.</p><p><strong>Methods: </strong>In this cross-sectional study, an online questionnaire was distributed from December 2022 to July 2023 across Saudi Arabia to determine pwMS interest in discussing their LTP. Participants included patients over 18 years, of any gender, diagnosed with MS. A nonprobability convenience sampling technique was used, with questionnaires sent through MS organizations and channels.</p><p><strong>Results: </strong>Almost two-thirds (66-68%) of the 375 respondents reported that their LTP had never been discussed during neurologist appointments and expressed uncertainty about it. Additionally, 23.5% noted discrepancies in information provided by different neurologists. Most (81.6%) expressed a desire for a prognostic tool at diagnosis. In this study, MS patients' desire to learn about a tool for assessing long-term prognosis was significantly associated with age, education level (<i>p</i><0.001), and gender (<i>p</i>=0.02). A higher percentage of women (65.7%) showed interest in learning about the tool compared to men (34.3%).</p><p><strong>Conclusion: </strong>While more than half of pwMS are curious about their prognosis, only about one-third have optimal discussions about LTP with neurologists. Many desire information on prognostic tools. Further research is needed to assess patients' knowledge of their prognosis and improve communication with physicians.</p>\",\"PeriodicalId\":19284,\"journal\":{\"name\":\"Neurosciences\",\"volume\":\"30 2\",\"pages\":\"108-116\"},\"PeriodicalIF\":1.2000,\"publicationDate\":\"2025-04-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11977590/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neurosciences\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.17712/nsj.2025.2.20240094\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neurosciences","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.17712/nsj.2025.2.20240094","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Do people with multiple sclerosis in Saudi Arabia want to know their prognosis? A cross-sectional nationwide study.
Objectives: To investigate whether Persons with MS (pwMS) in Saudi Arabia want to discuss their long-term prognosis (LTP) and the factors influencing this decision using a self-administered online questionnaire.
Methods: In this cross-sectional study, an online questionnaire was distributed from December 2022 to July 2023 across Saudi Arabia to determine pwMS interest in discussing their LTP. Participants included patients over 18 years, of any gender, diagnosed with MS. A nonprobability convenience sampling technique was used, with questionnaires sent through MS organizations and channels.
Results: Almost two-thirds (66-68%) of the 375 respondents reported that their LTP had never been discussed during neurologist appointments and expressed uncertainty about it. Additionally, 23.5% noted discrepancies in information provided by different neurologists. Most (81.6%) expressed a desire for a prognostic tool at diagnosis. In this study, MS patients' desire to learn about a tool for assessing long-term prognosis was significantly associated with age, education level (p<0.001), and gender (p=0.02). A higher percentage of women (65.7%) showed interest in learning about the tool compared to men (34.3%).
Conclusion: While more than half of pwMS are curious about their prognosis, only about one-third have optimal discussions about LTP with neurologists. Many desire information on prognostic tools. Further research is needed to assess patients' knowledge of their prognosis and improve communication with physicians.
期刊介绍：
Neurosciences is an open access, peer-reviewed, quarterly publication. Authors are invited to submit for publication articles reporting original work related to the nervous system, e.g., neurology, neurophysiology, neuroradiology, neurosurgery, neurorehabilitation, neurooncology, neuropsychiatry, and neurogenetics, etc. Basic research withclear clinical implications will also be considered. Review articles of current interest and high standard are welcomed for consideration. Prospective workshould not be backdated. There are also sections for Case Reports, Brief Communication, Correspondence, and medical news items. To promote continuous education, training, and learning, we include Clinical Images and MCQ’s. Highlights of international and regional meetings of interest, and specialized supplements will also be considered. All submissions must conform to the Uniform Requirements.
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