Sneha Mantri, Jennifer L Purks, Daniel Kinel, Lakshmi Arbatti, Abhishek Hosamath, Allison Allen, Amy Amara, Karen Anderson, Lana M Chahine, Shirley Eberly, Soania Mathur, David Standaert, David Oakes, Daniel Weintraub, Ira Shoulson, Connie Marras
{"title":"In Their Own Words: Fears Expressed by People with Parkinson's Disease in an Online Symptom Database.","authors":"Sneha Mantri, Jennifer L Purks, Daniel Kinel, Lakshmi Arbatti, Abhishek Hosamath, Allison Allen, Amy Amara, Karen Anderson, Lana M Chahine, Shirley Eberly, Soania Mathur, David Standaert, David Oakes, Daniel Weintraub, Ira Shoulson, Connie Marras","doi":"10.3233/JPD-230305","DOIUrl":null,"url":null,"abstract":"<p><p>Parkinson's disease (PD) carries substantial psychosocial burden. Using a database of responses by people with PD reporting up to five \"most bothersome problems,\" we identified 225 fear-based verbatims, which were organized using the framework method into 26 categories. Commonly-reported fears included uncertainty of progression (n = 60, 26.7%), fear of future cognitive impairment (n = 24, 10.7%) and fear of becoming a burden on others (n = 23, 10.2%). Fears in PD are wide-ranging and can constitute the most bothersome aspect of the condition. These data can be used to design interventions to lessen the psychosocial burden of PD.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"865-872"},"PeriodicalIF":4.0000,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11191490/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Parkinson's disease","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3233/JPD-230305","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"NEUROSCIENCES","Score":null,"Total":0}
引用次数: 0
Abstract
Parkinson's disease (PD) carries substantial psychosocial burden. Using a database of responses by people with PD reporting up to five "most bothersome problems," we identified 225 fear-based verbatims, which were organized using the framework method into 26 categories. Commonly-reported fears included uncertainty of progression (n = 60, 26.7%), fear of future cognitive impairment (n = 24, 10.7%) and fear of becoming a burden on others (n = 23, 10.2%). Fears in PD are wide-ranging and can constitute the most bothersome aspect of the condition. These data can be used to design interventions to lessen the psychosocial burden of PD.
期刊介绍:
The Journal of Parkinson''s Disease (JPD) publishes original research in basic science, translational research and clinical medicine in Parkinson’s disease in cooperation with the Journal of Alzheimer''s Disease. It features a first class Editorial Board and provides rigorous peer review and rapid online publication.