Invited Review: Pulmonary care for ALS: Progress, gaps, and paths forward
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Abstract
Introduction: Adults with amyotrophic lateral sclerosis (ALS) have been using home mechanical ventilation for over 50 years. More recently, home respiratory care has evolved to include portable home ventilators, airway clearance devices, and physiological assessments with telemonitoring capability.
Current State of Respiratory Care: National organizations currently offer incentives for providing a pulmonary care specialist within a multidisciplinary ALS clinic; however, several critical gaps exist between the available technology and employing a clinician
with the necessary expertise.
Gaps in Care: Lack of formal training and poor financial incentives have led to a paucity of both clinicians and active clinical research engaging in the home respiratory care of ALS. Criteria for noninvasive ventilation (NIV) initiation are controversial, and few guidelines exist on the ideal subsequent adjustments of NIV with evolving disease. Consequently, many patients with ALS tolerate NIV poorly and must face the harrowing decision of hospice vs tracheostomy. Advancement of respiratory care in ALS has been hindered by critical gaps in pulmonologist availability, training in chronic respiratory failure, financial support, clinical research, and clarity on ventilation management beyond initiation.
Bringing Respiratory Care Up to Speed: Only a multifaceted approach will suffice for addressing the voids in ALS respiratory care, including various education initiatives, financial incentives, clinical research programs, and elevating the standard of respiratory care.
Objectives:1)Implement appropriate measures for initiating and monitoring respiratory support for patients with ALS;
2) Identify and implement measures to facilitate greater involvement of pulmonary medicine specialists in ALS care;
3)Understand financial barriers to adequate ALS respiratory care and develop mechanisms to implement solutions.
ACCREDITATION STATEMENT The AANEM is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
CREDIT DESIGNATION The AANEM designates this enduring material for a maximum of 1
AMA PRA Category 1 Credits TM. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Credit expires 5/1/2026.
DISCLOSURE INFORMATIONJ.A. has served as a paid consultant for Baxter (formerly Hillrom). Conflicts have been resolved according to ACCME guidelines.
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