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

Kristen Zamietra, Erik B. Lehman, Stephanie H. Felgoise, Susan M. Walsh, Helen E. Stephens, Zachary Simmons

Research output: Contribution to journalArticle

18 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)55-58
Number of pages4
JournalAmyotrophic Lateral Sclerosis
Volume13
Issue number1
DOIs
StatePublished - Jan 1 2012

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Noninvasive Ventilation
Gastrostomy
Positive-Pressure Respiration
Quality of Life
Health Status
Prospective Studies

All Science Journal Classification (ASJC) codes

  • Clinical Neurology
  • Neurology

Cite this

Zamietra, Kristen ; Lehman, Erik B. ; Felgoise, Stephanie H. ; Walsh, Susan M. ; Stephens, Helen E. ; Simmons, Zachary. / Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS. In: Amyotrophic Lateral Sclerosis. 2012 ; Vol. 13, No. 1. pp. 55-58.
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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.",
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Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS. / Zamietra, Kristen; Lehman, Erik B.; Felgoise, Stephanie H.; Walsh, Susan M.; Stephens, Helen E.; Simmons, Zachary.

In: Amyotrophic Lateral Sclerosis, Vol. 13, No. 1, 01.01.2012, p. 55-58.

Research output: Contribution to journalArticle

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