Background

In spite of HMV being a standard of care for patients with respiratory failure, little focus has been given to understanding the outcomes that matter to patients, how the underlying disease and other factors influence these, and importantly, how these should influence HMV service provision.

Method

A 12 question survey was deployed in 12 countries (Europe, Asia and America) by Air Liquide to patients aged 18 years or over. Information about patients' sociodemographic characteristics, pathology and therapy were collected and patients were asked to select the 5 outcomes most important to them from a list of 14.

Results

3,634 patients responded: 1,467 with Obesity Hypoventilation Syndrome, 1,335 with Lung airway disease and 656 patients with Neuromuscular Disease. Most of the patients were male (61%), aged more than 65 years (56%) and were living with someone (83%). Patients received nursing care (33%), oxygen therapy (46%), tracheostomy (8%).

At a global level the three most important outcomes are the same for all patients, although the level of importance of these varies by disease as do the other outcomes selected:

- Being able to breathe well

- Being able to sleep well

- Feeling comfortable with the equipment

Factors identified that also influence the importance of the outcomes are: nursing care, therapy and the country the patient is living.

Conclusion

This international survey has given a voice to the patients to understand outcomes that matter to them. Understanding these results will help to segment our patients and to build personalised pathways to improve healthcare management, patient and clinical outcomes.