Research Priorities in Neuropalliative Care: A Consensus Statement From the International Neuropalliative Care Society

被引:0
作者
Lau, Winnie K. [1 ]
Fehnel, Corey R. [2 ,3 ]
Macchi, Zachary A. [4 ]
Mehta, Ambereen K. [5 ,6 ]
Auffret, Manon [7 ,8 ,9 ,10 ]
Bogetz, Jori F. [11 ,12 ]
Fleisher, Jori E. [13 ]
Graber, Jerome J. [14 ,15 ]
Leeper, Heather E. [16 ]
Manglani-Terranova, Heena R. [3 ,17 ]
Muehlschlegel, Susanne [18 ,19 ]
Mroz, Emily L. [20 ]
Pedowitz, Elizabeth J. [21 ]
Ramanathan, Usha [22 ]
Sarmet, Max [23 ,24 ]
Shlobin, Nathan A. [25 ]
Sokol, Leonard [26 ,27 ]
Weeks, Susan Allyson [28 ]
Xu, Jiayun [29 ]
Medsger, Helen Bundy [30 ]
Creutzfeldt, Claire J. [14 ,31 ]
Vranceanu, Ana-Maria [3 ,17 ]
Zahuranec, Darin B. [32 ]
Hwang, David Y. [1 ]
机构
[1] Univ North Carolina, Dept Neurol, Sch Med, 170 Manning Dr,CB 2075, Chapel Hill, NC 27514 USA
[2] Beth Israel Deaconess Med Ctr, Neurocrit Care & Hosp Neurol, Boston, MA USA
[3] Harvard Med Sch, Boston, MA USA
[4] Univ Colorado, Dept Neurol, Anschutz, Aurora, South Africa
[5] Johns Hopkins Sch Med, Dept Neurol, Baltimore, MD USA
[6] Johns Hopkins Sch Med, Dept Med, Baltimore, MD USA
[7] France Dev Elect, Monswiller, France
[8] Inst Neurosci Clin Rennes, Rennes, France
[9] Univ Rennes, Behav & Basal Ganglia Res Unit, CIC1414, Rennes, France
[10] Pontchaillou Univ Hosp, Rennes, France
[11] Univ Washington, Dept Pediat, Div Bioeth & Palliat Care, Sch Med, Seattle, WA USA
[12] Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth & Palliat Care, Ctr Clin & Translat Res, Seattle, WA USA
[13] Rush Univ, Med Ctr, Dept Neurol Sci, Chicago, IL USA
[14] Univ Washington, Dept Neurol & Neurosurg, Seattle, WA USA
[15] Univ Washington, Alvord Brain Tumor Ctr, Med Ctr, Seattle, WA 98195 USA
[16] Univ Chicago, Dept Med, Sect Geriatr & Palliat Med, Chicago, IL USA
[17] Massachusetts Gen Hosp, Ctr Hlth Outcomes & Interdisciplinary Res, Dept Psychiat, Boston, MA USA
[18] Univ Massachusetts, Dept Neurol, Chan Med Sch, Boston, MA USA
[19] Univ Massachusetts, Dept Anesthesia Crit Care, Chan Med Sch, Worcester, MA 01605 USA
[20] Yale Sch Med, Dept Internal Med, Sect Geriatr, New Haven, CT USA
[21] Mem Sloan Kettering Canc Ctr, Support Care Serv, New York, NY USA
[22] Univ Toronto, Fac Med, Div Neurol, Toronto, ON, Canada
[23] Univ Brasilia, Postgrad Program Hlth Sci & Technol, Brasilia, Brazil
[24] Hosp Apoio Brasilia, Dept Neuromuscular Dis, Brasilia, Brazil
[25] Northwestern Univ, Dept Neurol Surg, Feinberg Sch Med, Chicago, IL USA
[26] Univ Calif San Francisco, Dept Med, Div Palliat Med, San Francisco, CA USA
[27] Scripps Clin, Dept Med, Div Neurol, La Jolla, CA USA
[28] Antioch Univ, Grad Sch Leadership & Change, Yellow Springs, OH USA
[29] Purdue Univ, Sch Nursing, W Lafayette, IN USA
[30] Global Brain Hlth Inst, Lived Experience Grp, San Francisco, CA USA
[31] Univ Washington, Cambia Palliat Care Ctr Excellence, Seattle, WA USA
[32] Univ Michigan, Dept Neurol, Stroke Program, Ann Arbor, MI USA
基金
美国国家卫生研究院;
关键词
GOAL-CONCORDANT CARE; PALLIATIVE CARE; SERIOUS ILLNESS; OF-LIFE; COMMUNICATION; DISPARITIES; IMPAIRMENT; DISEASE; CULTURE; ADULTS;
D O I
10.1001/jamaneurol.2024.4932
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Importance The integration of palliative care in neurology, or neuropalliative care, is an emerging area of practice focused on holistically improving quality of life and reducing the burden of suffering for people living with serious neurologic disease and their care partners. Major neurology and palliative care societies have recognized the need to advance primary and specialty palliative care services for people with neurologic disease. However, research to support this work is in its early stages. Observations The International Neuropalliative Care Society Research Committee convened an interdisciplinary panel of experts, including clinicians, scientists, people with neurologic disease, and care partners, to identify priority research areas for the advancement of neuropalliative care as a field. Three priority areas highlighted in this review include (1) patient- and care partner-centered symptoms and outcomes specific to neurologic illness and tools for their assessment, (2) development of effective neuropalliative care interventions and delivery models, and (3) methods to support the ability to foster, deliver, and measure goal-concordant care over time. Conclusions and Relevance This Special Communication outlines some of the most pressing neuropalliative care research needs, the advancement of which will best serve patients of all ages living with serious neurologic diseases and their care partners. Research funding mechanisms are needed to support and sustain impactful work in this field.
引用
收藏
页码:295 / 302
页数:8
相关论文
共 50 条
  • [41] International palliative care research priorities: A systematic review
    Hasson, Felicity
    Nicholson, Emma
    Muldrew, Deborah
    Bamidele, Olufikayo
    Payne, Sheila
    McIlfatrick, Sonja
    BMC PALLIATIVE CARE, 2020, 19 (01)
  • [42] International palliative care research priorities: A systematic review
    Felicity Hasson
    Emma Nicholson
    Deborah Muldrew
    Olufikayo Bamidele
    Sheila Payne
    Sonja McIlfatrick
    BMC Palliative Care, 19
  • [43] The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study
    Buzgova, Radka
    Kozakova, Radka
    Bar, Michal
    BMC PALLIATIVE CARE, 2020, 19 (01)
  • [44] The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study
    Radka Bužgová
    Radka Kozáková
    Michal Bar
    BMC Palliative Care, 19
  • [45] Research Priorities in Spiritual Care: An International Survey of Palliative Care Researchers and Clinicians
    Selman, Lucy
    Young, Teresa
    Vermandere, Mieke
    Stirling, Ian
    Leget, Carlo
    JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2014, 48 (04) : 518 - 531
  • [46] "I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care
    Harrison, Krista L.
    Garrett, Sarah B.
    Halim, Madina
    Sideman, Alissa Bernstein
    Allison, Theresa A.
    Dohan, Daniel
    Naasan, Georges
    Miller, Bruce L.
    Smith, Alexander K.
    Ritchie, Christine S.
    JOURNAL OF ALZHEIMERS DISEASE, 2022, 90 (03) : 1301 - 1320
  • [47] Health Literacy and the Patient With Heart Failure-Implications for Patient Care and Research: A Consensus Statement of the Heart Failure Society of America
    Evangelista, Lorraine S.
    Rasmusson, Kismet D.
    Laramee, Ann S.
    Barr, Joan
    Ammon, Susan E.
    Dunbar, Sandra
    Ziesche, Susan
    Patterson, J. Herbert
    Yancy, Clyde W.
    JOURNAL OF CARDIAC FAILURE, 2010, 16 (01) : 9 - 16
  • [48] Understanding Psychosocial Functioning, Caregiver Burden, and Neuropalliative Care in Parkinson's Disease - A Mixed-Methods Study
    Sharma, Prerna
    Baruah, Upasana
    Yadav, Akanksha
    Kushwaha, Suman
    Dhamija, Rajinder K.
    ANNALS OF INDIAN ACADEMY OF NEUROLOGY, 2024, 27 (03) : 289 - 296
  • [49] The headache research priorities: Research goals from the American Headache Society and an international multistakeholder expert group
    Schwedt, Todd J.
    Pradhan, Amynah A.
    Oshinsky, Michael L.
    Brin, Mitchell F.
    Rosen, Howard
    Lalvani, Nim
    Charles, Andrew
    Ashina, Messoud
    Do, Thien Phu
    Burstein, Rami
    Gelfand, Amy A.
    Dodick, David W.
    Pozo-Rosich, Patricia
    Lipton, Richard B.
    Ailani, Jessica
    Szperka, Christina L.
    Charleston, Larry
    Digre, Kathleen B.
    Russo, Andrew F.
    Buse, Dawn C.
    Powers, Scott W.
    Tassorelli, Cristina
    Goadsby, Peter J.
    HEADACHE, 2024, 64 (08): : 912 - 930
  • [50] Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup
    Dorman, S.
    Jolley, C.
    Abernethy, A.
    Currow, D.
    Johnson, M.
    Farquhar, M.
    Griffiths, G.
    Peel, T.
    Moosavi, S.
    Byrne, A.
    Wilcock, A.
    Alloway, L.
    Bausewein, C.
    Higginson, I.
    Booth, S.
    PALLIATIVE MEDICINE, 2009, 23 (03) : 213 - 227