Quality of Life in Patients with Neuromuscular Disease Using Mechanical Ventilatory Support

ABSTRACT

OBJECTIVE: To estimate the quality of lives in neuromuscular disease patients using mechanical ventilators by comparing their `Index of Well-being' reported their own and caregivers. METHOD: The Semantic Differential Scale of General Affect and Life Domain Satisfaction Measures were instruments to measure perceived well-being. They were used to survey 33 ventilator-assisted patients and their caregivers. A third instrument was devised to study the satisfaction of rehabilitative management including mechanical ventilation. RESULTS: The caregivers significantly underestimated their patients' scores in the general affect instruments and life satisfaction (p<0.05). Twenty-six of 33 responding patients (78.8%) expressed satisfaction with present rehabilitative management. CONCLUSION: The most disabled ventilator-assisted patients with neuromuscular disease rated their quality of life as satisfying. The dependence on ventilation was not a predictor of a low quality of life. But the rating of the patient's quality of life from significant others was underestimated. This was important because patients' decision making concerning ventilation care was influenced by significant others.