Advancing Methodological Rigor for Psychosocial Aspects of Neuropalliative Care Interventions.

Abstract

Background: 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. Aim: 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. Results: 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. Conclusions: 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.