Amplifying patient voices amid pandemic: Perspectives on tracheostomy care, communication, and connection.

OBJECTIVE: To investigate perspectives of patients, family members, caregivers (PFC), and healthcare professionals (HCP) on tracheostomy care during the COVID-19 pandemic. METHODS: The cross-sectional survey investigating barriers and facilitators to tracheostomy care was collaboratively developed by patients, family members, nurses, speech-language pathologists, respiratory care practitioners, physicians, and surgeons. The survey was distributed to the Global Tracheostomy Collaborative's learning community, and responses were analyzed. RESULTS: Survey respondents (n = 191) from 17 countries included individuals with a tracheostomy (85 [45 %]), families/caregivers (43 [22 %]), and diverse HCP (63 [33.0 %]). Overall, 94 % of respondents reported concern that patients with tracheostomy were at increased risk of critical illness from SARS-CoV-2 infection and COVID-19; 93 % reported fear or anxiety. With respect to prioritization of care, 38 % of PFC versus 16 % of HCP reported concern that patients with tracheostomies might not be valued or prioritized (p = 0.002). Respondents also differed in fear of contracting COVID-19 (69 % PFC vs. 49 % HCP group, p = 0.009); concern for hospitalization (55.5 % PFC vs. 27 % HCP, p < 0.001); access to medical personnel (34 % PFC vs. 14 % HCP, p = 0.005); and concern about canceled appointments (62 % PFC vs. 41 % HCP, p = 0.01). Respondents from both groups reported severe stress and fatigue, sleep deprivation, lack of breaks, and lack of support (70 % PFC vs. 65 % HCP, p = 0.54). Virtual telecare seldom met perceived needs. CONCLUSION: PFC with a tracheostomy perceived most risks more acutely than HCP in this global sample. Broad stakeholder engagement is necessary to achieve creative, patient-driven solutions to maintain connection, communication, and access for patients with a tracheostomy.

Global Tracheostomy Collaborative: data-driven improvements in patient safety through multidisciplinary teamwork, standardisation, education, and patient partnership.

There is growing recognition of the need for a coordinated, systematic approach to caring for patients with a tracheostomy. Tracheostomy-related adverse events remain a pervasive global problem, accounting for half of all airway-related deaths and hypoxic brain damage in critical care units. The Global Tracheostomy Collaborative (GTC) was formed in 2012 to improve patient safety and quality of care, emphasising knowledge, skills, teamwork, and patient-centred approaches. Inspired by quality improvement leads in Australia, the UK, and the USA, the GTC implements and disseminates best practices across hospitals and healthcare trusts. Its database collects patient-level information on quality, safety, and organisational efficiencies. The GTC provides an organising structure for quality improvement efforts, promoting safety of paediatric and adult patients. Successful implementation requires instituting key drivers for change that include effective training for health professionals; multidisciplinary team collaboration; engagement and involvement of patients, their families, and carers; and data collection that allows tracking of outcomes. We report the history of the collaborative, its database infrastructure and analytics, and patient outcomes from more than 6500 patients globally. We characterise this patient population for the first time at such scale, reporting predictors of adverse events, mortality, and length of stay indexed to patient characteristics, co-morbidities, risk factors, and context. In one example, the database allowed identification of a previously unrecognised association between bleeding and mortality, reflecting ability to uncover latent risks and promote safety. The GTC provides the foundation for future risk-adjusted benchmarking and a learning community that drives ongoing quality improvement efforts worldwide.