In the Project on Death in America ALS cohort, 121 patients were followed t
o examine the timing of key milestones in the course of the disease, such a
s 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%. PE
G placement occurred, on average, 16 months after patients received confirm
ation of the diagnosis at our Center. Patients who received PEG were more l
ikely to have tracheostomies than patients not using PEG (p < 0.01). In mul
tivariate proportional hazard models that included both sociodemographic an
d disease indicators, the strongest predictor of PEG use was a patient's ba
seline 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 f
indings suggest that patients who use PEG may be consistently proactive in
the face of the disease. (C) 2001 Elsevier Science B.V. All rights reserved
.