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.
Download full-text PDF |
Source |
---|---|
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450826 | PMC |
http://dx.doi.org/10.25259/IJPC_181_2023 | DOI Listing |
World Neurosurg
December 2024
Clinical and Translational Neuroscience Unit, Department of Neurology and Feil Brain and Mind Research Institute, Weill Cornell Medicine, New York, New York, USA. Electronic address:
Providing specialized care to critically ill neurology patients has improved outcomes for patients with neurological emergencies; however, there are still some gaps in neurocritical care (NCC) that offer opportunities for improvement. Among these gaps, improving education of the multidisciplinary NCC team, targeting individualized treatments for neurologically critically ill patients, and reducing disparities for undeserved patients as well as disadvantaged areas are priorities to advance the field. This review focuses on the current challenges neurointensivists face, including difficulties in neuroprognostication, ethical challenges in end-of-life care, and neuropalliative care.
View Article and Find Full Text PDFJ Neurol Sci
November 2024
Department of Neurology, University of California, Los Angeles, (UCLA), Los Angeles, CA, United States of America. Electronic address:
This review critically examines neuro-palliative care disparities in historically minoritized groups in the U.S., particularly in Asian, Black, and Latino communities.
View Article and Find Full Text PDFIndian J Psychol Med
August 2024
Dept. of Neurology, National Institute of Mental Health and Neuro-sciences, Bengaluru, Karnataka, India.
Anaesthesiologie
November 2024
Klinik für Neurologie, varisano Klinikum Frankfurt Höchst, Frankfurt am Main, Deutschland.
Palliative medicine represents the holistic multiprofessional treatment of severely and incurably ill people and their relatives, addressing their complex physical, psychological, social and spiritual needs. The central therapeutic goals are the quality of life and alleviation of suffering. In the course of many neurological diseases, high symptom burden, long and variable trajectories and unfavorable prognosis at times create a need for palliative care even at an early stage, which is currently still inadequately met.
View Article and Find Full Text PDFSemin Neurol
October 2024
Department of Neurology, UW/Harborview Medical Center, Seattle, Washington.
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!