运动神经元病和帕金森病的神经姑息治疗需求清单:生物心理社会方法》。

IF 1.1 Q4 HEALTH CARE SCIENCES & SERVICES
Indian Journal of Palliative Care Pub Date : 2024-07-01 Epub Date: 2024-08-14 DOI:10.25259/IJPC_181_2023
Lithin Zacharias, Priya Treesa Thomas, Manjusha G Warrier, Ravi Yadav, Suvarna Alladi, Atchayaram Nalini, Pramod Kumar Pal
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引用次数: 0

摘要

目的:神经退行性疾病具有渐进性和不可逆转性,因此需要全面的姑息治疗。对这一人群的综合评估需求进行探讨的研究有限。本研究旨在为运动神经元疾病(MND)和帕金森病(PD)患者的姑息治疗需求制定一份评估清单:该核对表是通过广泛的文献综述以及与神经姑息治疗领域的利益相关者讨论后制定的。通过六位领域专家的反馈,最终确定了该核对表,其中包括 53 个项目,以满足 MND 和 PD 独特的生物心理社会需求。在印度南部的一家三级神经病学转诊护理中心接受治疗的 60 名患者和护理人员完成了核对表的填写:结果:MND患者在言语、吞咽和交流方面有更多的需求,而帕金森病患者在控制震颤、运动减少和主观僵硬感方面有更多的需求。人们发现,否认疾病的严重性是一个主要的社会心理问题。该核对表解决了评估神经退行性疾病(尤其是 MND 和帕金森病)姑息关怀需求的特定工具缺乏的问题。通过纳入疾病特异性和通用项目,该核对表可对患者的多维需求进行广泛评估:本研究开发了神经姑息治疗需求核对表(NPCNC),作为评估神经退行性疾病患者需求的重要工具,为神经姑息治疗领域做出了贡献。未来的研究重点应是在更大范围、更多样化的群体中完善和验证 NPCNC,使其适用于不同的环境,并研究其对随时间变化的敏感性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson's Disease: A Biopsychosocial Approach.

Objectives: Neurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD).

Materials and methods: The checklist was created through an extensive literature review and discussions with stakeholders in neuropalliative. Feedback from six field experts led to the finalisation of the checklist, which comprised 53 items addressing the unique biopsychosocial needs of MND and PD. Sixty patient-caregiver dyads receiving treatment in a tertiary referral care centre for neurology in south India completed the checklist.

Results: People with MND had more identified needs with speech, swallowing, and communication, while people with PD reported needs in managing tremors, reduced movements, and subjective feelings of stiffness. People denying the severity of the illness was found to be a major psychosocial issue. The checklist addresses the dearth of specific tools for assessing palliative care needs in neurodegenerative disorders, particularly MND and PD. By incorporating disease-specific and generic items, the checklist offers a broad assessment of patients' multidimensional needs.

Conclusion: This study contributes to the area of neuropalliative care by developing the neuropalliative care needs checklist (NPCNC) as a valuable tool for assessing the needs of individuals with neurodegenerative diseases. Future research should focus on refining and validating the NPCNC with larger and more diverse groups, applicability in different contexts, and investigating its sensitivity to changes over time.

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来源期刊
Indian Journal of Palliative Care
Indian Journal of Palliative Care HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.30
自引率
0.00%
发文量
57
期刊介绍: Welcome to the website of the Indian Journal of Palliative Care. You have free full text access to recent issues of the journal. The links connect you to •guidelines and systematic reviews in palliative care and oncology •a directory of palliative care programmes in India and IAPC membership •Palliative Care Formulary, book reviews and other educational material •guidance on statistical tests and medical writing.
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