Background

Health-related quality of life (HRQoL) is an important outcome of every treatment and is now included in most of the trials measuring the impacts of home mechanical ventilation (HMV), although over short to medium timeframes (12 months or less). It is uncertain whether HRQoL benefits obtained are retained in the long term. 

Aims

This study aimed to evaluate the evolution of the HRQoL in patients already established on HMV across a period of 5 years.

Methods

Five-year longitudinal cohort study conducted in an outpatient ventilation clinic. Consecutive patients on HMV for at least 30 days responded to the Severe Respiratory Insufciency (SRI) questionnaire at inclusion and again at 5 years.

Results

A total of 104 patients were included (male 56.7%, median age 69 [61;77] years). Almost half of the patients had COPD (49.0%). Patients were on HMV for a median of 43.5 [22;85.5] months, with overall good adherence (median 8 [6;9] daily hours). Fifty-seven (54.8%) patients were alive at 5 years. HRQoL results are displayed in the following Table.

Conclusions

This study showed that HRQoL is significantly impaired in home mechanically ventilated patients. It also found that HRQoL measured by a condition-specific questionnaire at two points in a 5-year period in patients with long-term HMV remained stable in surviving patients.