Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, Boston, MA, USA.
Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
J Palliat Care. 2024 Apr;39(2):92-96. doi: 10.1177/08258597241232490. Epub 2024 Feb 11.
Neurological disorders (NDs) have unique biopsychosocial-spiritual features that impact patients and their families. As a result, the subspeciality of neuropalliative care (NPC) emerged within the past decade and has grown exponentially in research and practice. Given the cognitive, emotional, and behavioral changes associated with NDs, psychosocial components (eg, coping skills) of NPC interventions are essential for improving the quality of life for patients and families. However, psychosocial components of NPC interventions warrant more rigorous testing to improve their evidence base and their likelihood of implementation and dissemination. In this commentary, we provide methodological recommendations with the goal of improving scientific knowledge and rigor for psychosocial components of multicomponent NPC interventions in clinical trials. We emphasize the need for transparent reporting of psychosocial intervention components; using established models of intervention development to guide the development and testing of multicomponent NPC interventions; identifying mechanisms of action for psychosocial outcomes; and choosing psychometrically sound measures for mechanisms and outcomes. Given the importance of psychosocial care to the holistic NPC model, rigorous testing of psychosocial components of NPC interventions is a high priority for clinical investigators to advance the evidence base and practice of NPC.
神经疾病(NDs)具有独特的生物心理社会-精神特征,影响着患者及其家属。因此,神经姑息治疗(NPC)亚专业在过去十年中出现,并在研究和实践中呈指数级增长。鉴于与 NDs 相关的认知、情感和行为变化,NPC 干预措施的心理社会组成部分(例如,应对技能)对于提高患者和家庭的生活质量至关重要。然而,NPC 干预措施的心理社会组成部分需要更严格的测试,以提高其证据基础及其实施和传播的可能性。在这篇评论中,我们提供了方法学建议,旨在提高临床试验中多成分 NPC 干预措施的心理社会成分的科学知识和严谨性。我们强调需要透明报告心理社会干预成分;使用既定的干预发展模型来指导多成分 NPC 干预的开发和测试;确定心理社会结果的作用机制;并为机制和结果选择具有良好心理测量学特性的措施。鉴于心理社会护理对整体 NPC 模型的重要性,对 NPC 干预措施的心理社会成分进行严格测试是临床研究人员的当务之急,以推进 NPC 的证据基础和实践。