Zacharias Lithin, Thomas Priya Treesa, Warrier Manjusha G, Yadav Ravi, Alladi Suvarna, Nalini Atchayaram, Pal Pramod Kumar
Faculty of Health, Science, Social Care and Education, Kingston University, London, United Kingdom.
Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India.
Indian J Palliat Care. 2024 Jul-Sep;30(3):232-238. doi: 10.25259/IJPC_181_2023. Epub 2024 Aug 14.
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).
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.
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.
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.
神经退行性疾病因其进展性和不可逆性需要全面的姑息治疗。有限的研究探讨了这一人群的综合评估需求。本研究旨在制定一份清单，用于评估运动神经元病（MND）和帕金森病（PD）患者的姑息治疗需求。
该清单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而制定的。六位领域专家的反馈促成了清单的最终确定，该清单包含53项内容，涉及MND和PD独特的生物心理社会需求。在印度南部一家三级神经转诊护理中心接受治疗的60对患者-照顾者完成了该清单。
MND患者在言语、吞咽和沟通方面有更多已确定的需求，而PD患者报告在控制震颤、运动减少和主观僵硬感方面有需求。发现否认疾病严重性是一个主要的社会心理问题。该清单解决了神经退行性疾病，特别是MND和PD中评估姑息治疗需求的特定工具匮乏的问题。通过纳入疾病特异性和一般性项目，该清单对患者的多维需求进行了广泛评估。
本研究通过开发神经姑息治疗需求清单（NPCNC），为神经姑息治疗领域做出了贡献，该清单是评估神经退行性疾病患者需求的宝贵工具。未来的研究应集中于用更大、更多样化的群体完善和验证NPCNC，其在不同背景下的适用性，以及研究其对随时间变化的敏感性。
