Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS

Abstract

Non-invasive positive pressure ventilation (NIPPV) may improve health-related quality of life (HRQoL) in patients with ALS. The effect of percutaneous endoscopic gastrostomy (PEG) on HRQoL is not known. Instruments measuring QoL more broadly have not been used to assess effects of these interventions. This study was undertaken to do so via the ALS-Specific Quality of Life Instrument-revised (ALSSQOL-R). A retrospective review was carried out of ALS patients who had undergone one QoL assessment prior to NIPPV or PEG initiation and two assessments following one of these interventions. Random coefficients models were developed. Twenty-two patients met criteria for inclusion: six NIPPV, 11 PEG, and five NIPPV + PEG. The ALSSQoL-R did not change significantly following NIPPV or PEG or both. Function declined in all three groups over the same time-period. In conclusion, overall QoL in ALS does not appear to change after NIPPV or PEG. This may reflect the impact of non-health-related factors or may be due to a response shift. QoL instruments that include domains outside of health status may not be sensitive to changes from single interventions. Larger, prospective studies are needed.

Key words::

• Amyotrophic lateral sclerosis
• quality of life
• non-invasive ventilation
• gastrostomy

Acknowledgements

This project was supported in part by the Paul and Harriett Campbell Fund for ALS Research, the Zimmerman Family Love Fund, the Greater Philadelphia Chapter of the ALS Association, and multiple private donations to the Penn State Hershey Medical Center ALS Program.

Declaration of interest: Z. Simmons has received compensation from Neuralstem, Inc. and from Cytokinetics, Inc. as a consultant for studies related to ALS. None of the other authors has anything to disclose.