{"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.
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。