How and where is mask ventilation fitted in ALS?

Mask ventilation is usually adapted during a hospital stay. Hospital treatment lasts around seven to ten days. An extension of hospital treatment beyond this is also possible if the adaptation of mask ventilation is more complex. A few clinics in Germany have specialized in the adaptation of mask ventilation for ALS patients. These may be lung clinics that (in addition to their expertise in lung diseases) have specialized in the field of neurology (especially neuromuscular diseases including ALS). On the other hand, there are also neurological clinics that have developed a focus of expertise in respiratory medicine (in addition to neurological expertise).

In other clinics, sleep physicians are employed (usually in cooperation between specialists in neurology and internal medicine) who have found a specialist approach to respiratory medicine through their basic experience in the treatment of sleep apnoea (which is also treated with mask ventilation). Therefore, depending on the region and clinic, different specialists (neurologists, pneumologists or sleep physicians) can carry out the adaptation of mask ventilation. The location of the fitting can also vary greatly: In a sleep laboratory, on a specialized “ventilation ward”, on a monitoring or intensive care unit or in a neurology department. Under favorable conditions, the adaptation can also be carried out in a day clinic or special outpatient clinic.

Outpatient treatment is only possible if the appropriate specialized staff and spatial conditions are available. The medical circumstances must also be suitable. For example, there should be no severe bulbar symptoms or severe respiratory dysfunction. During the hospital stay, the adaptation is carried out by respiratory therapists (specialized nursing staff with additional training in respiratory medicine) and medical specialists.

A mask is selected that is suitable for the size of the nose, mouth and head. The mask is connected to a ventilator via a tube system, on which individual ventilation parameters are set. The mask is put on at night with a basic setting. Various ventilation parameters are monitored during the night’s sleep (respiratory rate, oxygen saturation and carbon dioxide concentration). Depending on the ventilation parameters mentioned and the patient’s subjective experience of ventilation (relief from the respiratory effort and possible “side effects” of the mask), the ventilation parameters are further changed and adjusted (“adaptation”) during the following night. Each night, the parameters are gradually adapted until an optimal balance is achieved between effective treatment (with sufficient ventilation pressures) and the least possible strain on the patient due to mask ventilation.

This adaptation process is comparable to the search for the appropriate dose of a drug, where the appropriate dose must also be found that enables an optimal effect with the least possible side effects (or even without any side effects). The appropriate “dose” of respiratory medicine must also be found for mask ventilation. It is therefore not possible to plan the exact period of mask adaptation prior to hospital admission. In individual cases, adaptation may be quicker or slower than planned. Therefore, a certain amount of time should be allowed for before admission to hospital and a certain amount of “patience” should be brought along.