Optimizing NIPPV Use for Patients With ALS

The data card records critical features of NIPPV acceptance (hours and timing of use) and
adherence (apnea/hypopnea index, mask leak, minute ventilation); but to date data card
monitoring has not yet been incorporated fully into ALS clinic practice. We will limit our
focus to patients who meet Medicare-reimbursement criteria or AAN-recommended practice
parameters for initiating NIPPV. The larger question guiding this research is whether data
card monitoring and communication of these results to clinicians and patient families
promotes "optimal use" of NIPPV. We define optimal use as (i) high acceptance, as indicated
by daily night time use greater than 4 hours, and (ii) high adherence, as indicated by
apnea/hypopnea index, mask leak, and minute ventilation. We will test whether timely
reporting of acceptance and adherence values to patients and clinicians increases the
likelihood of (i) changes in orofacial masks and settings on devices and continued use of
devices, and (ii) positive patient mood and sleep quality and lower caregiver burden over
follow-up.

Inclusion Criteria:

- Definite or probable ALS

- Medicare or AAN criteria for initiating NIPPV

- Community resident

- English speaker

Exclusion Criteria:

- Unable to give informed consent

- Other pulmonary or cardiac conditions that complicate use of NIPPV

- Report from physician that participation would be harmful