Longitudinal Transdisciplinary Neuropalliative care Support (LOTUS) Study - a conceptual framework and fidelity assessments

Importance: Severe stroke is a leading cause of death and disability worldwide. Survivors and their families face long-term unmet needs, including care that does not reflect patients' values, fragmented care, and high rates of psychological distress among caregivers. Objective: To describe the conceptual framework of the longitudinal transdisciplinary neuropalliative care support (LOTUS) intervention and assess its fidelity in a pilot feasibility study. Design: Pilot feasibility randomized study; fidelity was assessed using weekly checklists completed by the LOTUS nurse and qualitative analysis of weekly LOTUS team meeting transcripts. Setting: Single comprehensive stroke center in Western New York. Participants: Patients hospitalized with severe stroke and their caregivers. Dyads were randomized to usual care or intervention. Intervention: The LOTUS intervention is implemented in a stepped-care fashion using 5 strategies: Awareness, Assistance, Adjustment, Acceptance and Alignment (5As). Led by a specially trained nurse with a chaplain, social worker, psychologist, and neuropalliative care physician, the LOTUS team follows dyads from early in the hospital course through 6 months. Main Outcomes and Measures: Fidelity, the degree to which the intervention was delivered as intended, assessed via (1) utilization of 5A activities from weekly LOTUS checklists; (2) thematic analysis of weekly LOTUS team meeting transcripts. Results: Of 26 patients in the trial, 13 were randomized to intervention. The LOTUS nurse completed 108 checklists, with an average of 619 minutes of direct contact per participant over 6 months. Each component of the 5A's was utilized. Awareness and Assistance predominated early after enrollment and revolved around personhood, support, and self-efficacy. Adjustment was especially relevant during care transitions and was typically supported by the LOTUS social worker. Acceptance and Alignment were more prevalent during later meetings, with the LOTUS psychologist supporting identification and modeling of coping skills and the LOTUS physician guiding prognosis and goals-of-care conversations. The LOTUS nurse served as primary point of contact, providing continuity and a trusting relationship, while other team members functioned in a predominantly advisory role. Conclusions: The LOTUS intervention was delivered with fidelity to the 5A-framework, supporting a future randomized clinical trial to evaluate its efficacy in patients with severe stroke and their caregivers.