Optimizing NIPPV Use for Patients with ALS: Pennsylvania Consortium

University of Pittsburgh

Hypothesis:

This research will examine the utility of the data card recording capacity of nasal ventilation devices (NIPPV) in people with ALS to optimize use. The data card recording capacity of NIPPV devices, combined with notification of families and clinicians regarding acceptance and adherence, to optimize use of the devices and develop such guidelines. 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 our knowledge data card monitoring has not yet been incorporated fully into disease management or patient education.

Aim:

To determine if providing families and clinicians with feedback and linked recommendations for NIPPV performance, derived from data card recording, will result in more optimal use of NIPPV.  Our specific aims are:

1. To determine if patients in the two conditions differ in length of time from start of NIPPV to discontinuation and reasons for discontinuation.

2. To determine if patients in the two conditions differ in self-reported mood, fatigue, and sleep quality, and if family caregivers in the two groups differ in burden/satisfaction related to care.

3. To determine if patients in the feedback condition are more likely to have family- or clinician-initiated adjustment of orofacial masks and device settings.

Status:

Patients will be recruited at 3 clinics of the Pennsylvania ALS Consortium (Drexel University College of Medicine, Hershey-Penn State, University of Pittsburgh Medical Center (UPMC)