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

Area of Science:

• Neurology
• Palliative Care
• Health Services Research

Background:

• Severe stroke significantly contributes to global mortality and disability.
• Survivors and caregivers experience unmet needs, including value-discordant care and psychological distress.

Purpose of the Study:

• To outline the framework of the longitudinal transdisciplinary neuropalliative care support (LOTUS) intervention.
• To assess the fidelity of the LOTUS intervention in a pilot feasibility study.

Main Methods:

• A pilot feasibility randomized study was conducted.
• Intervention fidelity was measured using weekly checklists completed by the LOTUS nurse.
• Qualitative analysis of weekly LOTUS team meeting transcripts was also performed.

Main Results:

• The LOTUS intervention was implemented with high fidelity across its 5A framework (Awareness, Assistance, Adjustment, Acceptance, Alignment).
• The LOTUS nurse provided consistent contact, with all 5A components utilized, adapting to patient needs over 6 months.
• Specific strategies like Awareness and Assistance were prominent early, while Adjustment, Acceptance, and Alignment became more relevant later in the care continuum.

Conclusions:

• The LOTUS intervention was delivered as intended, demonstrating high fidelity to the 5A framework.
• These findings support the progression to a randomized clinical trial to evaluate the efficacy of LOTUS for severe stroke patients and their caregivers.