"Ups and Downs, Joys and Sorrows" - Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson's Disease Clinic.

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Journal of Patient-Centered Research and Reviews Pub Date : 2024-10-15 eCollection Date: 2024-01-01 DOI:10.17294/2330-0698.2078
Esme D Trahairv, Allison M Allen, Sneha Mantri
{"title":"\"Ups and Downs, Joys and Sorrows\" - Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson's Disease Clinic.","authors":"Esme D Trahairv, Allison M Allen, Sneha Mantri","doi":"10.17294/2330-0698.2078","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Barriers to communication and inaccurate provider assumptions about patient priorities limit the delivery of comprehensive, high-quality, patient-centered care (PCC) to people with Parkinson's (PWP). This study aimed to analyze priorities of PWP using a qualitative, unstructured single-question survey and to test associations with validated quality of life (QOL) measures.</p><p><strong>Methods: </strong>During appointments at a subspecialty, interdisciplinary clinic, PWP (n=139) provided written responses to the prompt: \"What is important for your care team to know about you?\" Patient Health Questionnaire, Montreal Cognitive Assessment, and Hoehn and Yahr scales were obtained through retrospective chart review. Key qualitative themes were identified through grounded theory analysis, and associations with quantitative health measures were tested with correlation analyses.</p><p><strong>Results: </strong>Common themes included participant health (eg, PD-related goals and comorbidities), non-illness identities (eg, family or community role), and the psychosocial impact of PD (eg, losing independence and uncertainty). Positive sentiments (n=73), such as motivation and optimism, were more common than negative sentiments (n=45), such as loss and fear. There was moderate concordance between worsened mental health and uncertainty (rho=0.206, p=0.02) and inverse concordance between worsened mobility and gratitude (rho=-0.174, p=0.04).</p><p><strong>Conclusions: </strong>The range of priorities that PWP want to share with their care team is more diverse than that of common provider assumptions, is correlated with clinical outcomes such as mental health and mobility, and may not be captured by existing QOL assessment tools. An open-ended, qualitative prompt should be incorporated into routine specialist care for PWP as a valuable QOL indicator.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":null,"pages":null},"PeriodicalIF":1.6000,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493310/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient-Centered Research and Reviews","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.17294/2330-0698.2078","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0

Abstract

Purpose: Barriers to communication and inaccurate provider assumptions about patient priorities limit the delivery of comprehensive, high-quality, patient-centered care (PCC) to people with Parkinson's (PWP). This study aimed to analyze priorities of PWP using a qualitative, unstructured single-question survey and to test associations with validated quality of life (QOL) measures.

Methods: During appointments at a subspecialty, interdisciplinary clinic, PWP (n=139) provided written responses to the prompt: "What is important for your care team to know about you?" Patient Health Questionnaire, Montreal Cognitive Assessment, and Hoehn and Yahr scales were obtained through retrospective chart review. Key qualitative themes were identified through grounded theory analysis, and associations with quantitative health measures were tested with correlation analyses.

Results: Common themes included participant health (eg, PD-related goals and comorbidities), non-illness identities (eg, family or community role), and the psychosocial impact of PD (eg, losing independence and uncertainty). Positive sentiments (n=73), such as motivation and optimism, were more common than negative sentiments (n=45), such as loss and fear. There was moderate concordance between worsened mental health and uncertainty (rho=0.206, p=0.02) and inverse concordance between worsened mobility and gratitude (rho=-0.174, p=0.04).

Conclusions: The range of priorities that PWP want to share with their care team is more diverse than that of common provider assumptions, is correlated with clinical outcomes such as mental health and mobility, and may not be captured by existing QOL assessment tools. An open-ended, qualitative prompt should be incorporated into routine specialist care for PWP as a valuable QOL indicator.

查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
"起起落落,喜怒哀乐"--跨学科帕金森病诊所对患者优先事项的评估和临床相关性。
目的:沟通障碍和医疗服务提供者对患者优先事项的不准确假设限制了向帕金森病患者(PWP)提供全面、优质、以患者为中心的护理(PCC)。本研究旨在使用定性、非结构化的单个问题调查分析帕金森病患者的优先考虑事项,并测试其与有效的生活质量(QOL)衡量标准之间的关联:在一家亚专科跨学科诊所就诊期间,PWP(n=139)对以下提示做出了书面回答:"您的护理团队需要了解您的哪些重要信息?通过回顾性病历审查获得了患者健康问卷、蒙特利尔认知评估以及 Hoehn 和 Yahr 量表。通过基础理论分析确定了关键的定性主题,并通过相关分析检验了与定量健康指标之间的关联:共同主题包括参与者的健康状况(如与帕金森病相关的目标和合并症)、非疾病身份(如家庭或社区角色)以及帕金森病的社会心理影响(如失去独立性和不确定性)。积极情绪(人数=73),如动力和乐观,比消极情绪(人数=45)更常见,如失落和恐惧。心理健康状况恶化与不确定性之间存在中度相关性(rho=0.206,p=0.02),行动能力恶化与感激之情之间存在反相关性(rho=-0.174,p=0.04):结论:残疾人希望与护理团队分享的优先事项范围比一般医疗服务提供者的假设更为多样,与心理健康和行动能力等临床结果相关,现有的 QOL 评估工具可能无法捕捉到这些优先事项。应将开放式定性提示纳入针对残疾人的常规专科护理中,作为一项有价值的 QOL 指标。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 去求助
来源期刊
Journal of Patient-Centered Research and Reviews
Journal of Patient-Centered Research and Reviews HEALTH CARE SCIENCES & SERVICES-
自引率
5.90%
发文量
35
审稿时长
20 weeks
期刊最新文献
"It Is What It Is" - The Lived Experience of Women With Breast Cancer Undergoing Axillary Lymph Node Dissection. "Ups and Downs, Joys and Sorrows" - Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson's Disease Clinic. Assessing the Climate Readiness of Physician Education Leaders in Graduate Medical Education. Determining the Prognostic Value of Complete Blood Count Subgroup Parameters in Staphylococcus aureus Bacteremia. Factors Influencing Self-Wound Care Adoption in Singaporean Communities: A Cross-Sectional Survey.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1