Development and Pilot Testing for a Novel Shared Decision-Making Tool for Tracheostomy Decision-Making

BackgroundTracheostomy and prolonged mechanical ventilation decision-making is one of the most emotionally difficult decisions facing surrogate decision-makers in health care. Often, surrogates face decisions between the potential for prolonged life support verses transitions to comfort measures and possible death. Despite more than two decades of research, major gaps exist in improving the decision-making process. ObjectiveDevelop and pilot testing a novel shared decision-making tool for tracheostomy and prolonged mechanical ventilation. MethodsDevelopment of the novel web-based conversation tool called TRACH-Support was an iterative process engaging key stakeholders (patients, surrogates, critical care providers, and shared decision-making experts) at multiple points. Development of the website used a Human-Centered Design approach with modern graphics and website interfaces. Pragmatic pilot testing was a mixed methods approach recruiting surrogates, providers, nurses, and respiratory therapists. Primary quantitative outcomes included Usability (System Usability Scale (SUS)) and Acceptability (Acceptability of Intervention (AIM)) measures with multiple secondary outcomes. Qualitative interviews used a Think Aloud approach and matrix analysis methodology. ResultsA total of 86 participants were recruited for the quantitative survey with 10 surrogates and 10 providers completing qualitative interviews. Mean SUS score among all participants was 68.2/100 (SD=10.7) but surrogates specifically had a mean SUS=74.2/100 (74.2). The overall mean AIM score was 4.2/5 (SD=0.8) and 79.4% of all participants viewed TRACH-Support as "Acceptable" or "Very Acceptable". Qualitative interviews indicated that TRACH-Support had high Usability and Acceptability. Customizability, pictures, novel outcomes, and the organization were all features that contributed to participant views. Participants also suggested several modifications including reducing the word count, adding video testimonials, and adding information on how faith/religion may play a role in decision-making for some. ConclusionsTRACH-Support, a novel, web-based, customizable and personalizable conversation tool for tracheostomy and prolonged mechanical ventilation was developed according to the most rigorous standards for decision-support tools. It had high Usability and Acceptability as assessed by quantitative and qualitative measures. Future large-scale testing is needed to assess real-world effectiveness and implementation.