Abstract
INTRODUCTION: No national Canadian data define resource requirements and care delivery for ventilator-assisted individuals (VAIs) requiring long-term institutional care. Such data will assist in planning health care services to this population.OBJECTIVE: To describe institutional and patient characteristics, prevalence, equipment used, care elements and admission barriers for VAIs requiring long-term institutional care.METHODS: Centres were identified from a national inventory and snowball referrals. The survey weblink was provided from December 2012 to April 2013. Weekly reminders were sent for six weeks.RESULTS: The response rate was 84% (54 of 64), with 44 adult and 10 pediatric centres providing data for 428 VAIs (301 invasive ventilation; 127 noninvasive ventilation [NIV]), equivalent to 1.3 VAIs per 100,000 population. An additional 106 VAIs were on wait lists in 18 centres. More VAIs with progressive neuromuscular disease received invasive ventilation than NIV (P<0.001); more VAIs with chronic obstructive pulmonary disease (P<0.001), obesity hypoventilation syndrome (P<0.001) and central hypoventilation syndrome (P=0.02) required NIV. All centres used positive pressure ventilators, 21% diaphragmatic pacing, 15% negative pressure and 13% phrenic nerve stimulation. Most centres used lung volume recruitment (55%), manually (71%) and mechanically assisted cough (55%). Lack of beds and provincial funding were common admission barriers.CONCLUSIONS: Variable models and care practices exist for institutionalized care of Canadian VAIs. Patient prevalence was 1.3 per 100,000 Canadians.