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Neurology and Neurosurgery

Muehlschlegel Lab

Pilot Trial of a Web-Based Decision Aid and Communication Tool

Full study name: Pilot Trial of a Web-Based Decision Aid + Communication (DA+C) Tool to Enhance Communication and Shared Decision-Making for Surrogates of Patients Who are Critically Ill With SABI: The WEB-DAC Pilot

Clinicaltrial.gov title: Feasibility of a Digital Goals-of-Care Decision Aid for Clinicians and Families of Patients With SABI

Clinicaltrials.gov ID: NCT05671874

Funding:

  • NIH/NINR R21NR020231
  • Johns Hopkins Stimulating and Advancing ACCM Research (StAAR) Award
  • The Patrick and Catherine Weldon Donaghue Medical Research Foundation

Study Overview

The study is recruiting family members of patients currently admitted with severe acute brain injury due to ischemic or hemorrhagic stroke, or due to trauma, at The Johns Hopkins Hospital or Johns Hopkins Bayview Medical Center (both in Baltimore) or UMass Memorial Medical Center (Worcester, Massachusetts).

This pilot study will evaluate the feasibility of a user-friendly, scalable, web/mobile-based shared decision-making and communication tool and explore its impact on patient-centered and family-centered outcomes, health care use and costs. Designed for users at all literacy levels, the DA+C tool will be tested at three academic hospitals that have specialized neuro-ICUs. The trial will compare the standard of care to the DA+C tool, assessing feasibility (screening, recruitment, retention, intervention fidelity) and exploring its impact on decision-making quality, patient outcomes, surrogate psychological distress, caregiver burden and health care costs, using validated measures. We will also examine barriers and facilitators regarding DA implementation.

flow chart of the feasibility trial process using digital DA

Research Problem

A large evidence-base shows that shared decision-making tools (decision aids) improve the quality of patients’ decisions. However, no empirically validated decision aids exist for surrogate decision-making by patients who are at high risk of death or disability after severe acute brain injury due to ischemic or hemorrhagic strokes or after a traumatic brain injury.

Previous Research

With significant stakeholder involvement (families, clinicians, nurses, palliative care teams, physical therapists, social workers, case managers), Muehlschlegel and her team initially developed a highly usable and acceptable tailored paper-based decision aid for families of patients who are critically ill with SABI. The aid is conceptually grounded in the Ottawa Decision Support Framework and aims to enhance (not replace) clinician-family communication.

This decision aid was shown to be feasible in a pilot trial in two ICUs. Read related publications:

Muehlschlegel and collaborators at the Worcester Polytechnic institute have widened the tool’s use by leveraging a digital platform. The team developed a digital web/mobile-based decision aid and communication tool, which is more portable and shareable among family members than the paper-based version. The increased accessibility is especially valuable when family members don’t live close to the patient or are not allowed to visit the ICU (such as during the COVID-19 pandemic). The integration of videos allows use by lower-literacy groups.

Publications

Abstracts

  • Sivakumar S, Alrefaei D, Zhang L, Franco C, Tulu B, Djamasbi S, Muehlschlegel S. Eye-Tracking to Optimize a Digital Goals-of-Care Decision Aid for Patients with Severe Acute Brain Injury. Distinguished abstract presentation, poster presentation at the 21st Neurocritical Care Society annual meeting, Phoenix (2023).
  • Zhang L, Alrefaei D, Djamasbi S, Tulu B, Sankar G, Ge C, Meraj S, Muehlschlegel S. Examining User Engagement with a Decision Aid. Poster/paper presentation, fifth annual conference of the New England chapter of the Association for Information Systems, Durham, New Hampshire (2023) (Best Student Paper award).