RESUMO
BACKGROUND: Home mechanical ventilation (HMV) is known to be a successful therapy for chronic respiratory insufficiency, with regard to long-term survival. However, the quality of life (QoL) of patients receiving HMV has not previously been systematically investigated. The purpose of this study was to assess the QoL of patients with neuromuscular disorders and skeletal deformities (ie, restrictive lung disease) receiving HMV. METHODS: Patients receiving HMV treated by tracheostomy or noninvasive ventilation (NIV). Three different, standardized, and validated questionnaires were used: the Sickness Impact Profile (SIP), the Health Index (HI), and the Sense of Coherence (SOC) scale. Underlying diseases were postpolio dysfunction (37%), neuromuscular disorder (20%), scoliosis (15%), and other diseases (28%). RESULTS: The group treated with tracheostomy had higher HI scores than the group treated with NIV. For the three main diagnosis groups treated with tracheostomy or NIV, the patients with postpolio dysfunction treated with tracheostomy had lower SIP scores than the patients with postpolio dysfunction treated with NIV. This was in contrast to the patients with neuromuscular disorders treated with tracheostomy, who had higher scores in the SIP, compared with patients with postpolio dysfunction treated with tracheostomy and patients with neuromuscular disorders treated with NIV. A SIP score > 10% indicates a functional disability of clinical importance, and a high score on the HI and SOC scale indicates good perceived health. For the three main diagnosis groups treated with NIV, the patients with scoliosis had no dysfunction of clinical importance (4.6 +/- 3.7) on the SIP score compared with patients with postpolio dysfunction (15.5 +/- 7.6) and patients with neuromuscular disorders (13.2 +/- 5.2) [mean +/- SD]. The men showed more dysfunction in the SIP score than the women. CONCLUSION: Patients receiving HMV reported a good perceived health, despite severe physical limitations. The patients with postpolio dysfunction and the patients with scoliosis treated with tracheostomy perceived the best health, compared with NIV for this diagnosis.
