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Published on: March 4, 2014
Incidence and predictors of PEG placement in ALS/MND
S M Albert1, P L Murphy, M Del Bene
1Eleanor and Lou Gehrig MDA/ALS Center, Neurological Institute, Columbia University, New York, NY, USA. sma10@columbia.edu
Insights
Percutaneous endoscopic gastrostomy (PEG) placement in ALS patients often occurs 16 months post-diagnosis. Patient preference strongly predicts PEG use, indicating proactive disease management.
Area of Science:
- Neurology
- Gastroenterology
- Palliative Care
Background:
- Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease.
- Nutritional support and respiratory interventions are critical in ALS management.
- Understanding patient preferences for interventions like PEG is vital.
Purpose of the Study:
- To examine the timing of Percutaneous Endoscopic Gastrostomy (PEG) placement in ALS patients.
- To identify predictors of PEG use in the ALS cohort.
- To explore the relationship between PEG use and other healthcare decisions.
Main Methods:
- Prospective cohort study of 121 ALS patients.
- Analysis of key milestones including PEG and tracheostomy placement.
- Multivariate proportional hazard models to assess predictors of PEG use.
Main Results:
- Cumulative incidence of PEG placement reached 48% over 2-4 years.
- PEG placement occurred at a median of 16 months post-diagnosis.
- Patient preference was the strongest predictor of PEG use (p<0.01).
- PEG users were more likely to have tracheostomies and health care proxies.
Conclusions:
- PEG use in ALS patients is associated with proactive engagement in healthcare.
- Patient preference is a key determinant in decisions regarding PEG placement.
- PEG placement may align with broader end-of-life care planning in ALS.
Abstract:
In the Project on Death in America ALS cohort, 121 patients were followed to examine the timing of key milestones in the course of the disease, such as tracheostomy and PEG placement. During the 2- to 4-year follow-up period, 26.5% of patients received PEG, yielding a cumulative incidence of 48%. PEG placement occurred, on average, 16 months after patients received confirmation of the diagnosis at our Center. Patients who received PEG were more likely to have tracheostomies than patients not using PEG (p<0.01). In multivariate proportional hazard models that included both sociodemographic and disease indicators, the strongest predictor of PEG use was a patient's baseline preference for PEG: 57.1% of patients "absolutely in favor" went on to have PEG, compared to only 9.3% of those "absolutely against" (p<0.01). PEG users were more likely to have initiated health care proxies. These findings suggest that patients who use PEG may be consistently proactive in the face of the disease.

