A prospective study of preferences and actual treatment choices in ALS

Objective: To determine whether ALS patients' preferences for ameliorative or life-extending technologies elicited early in the disease were related t o later treatment choices. Methods: In this prospective cohort study, 121 p atients were seen at a tertiary ALS care center and followed for a median o f 12 months. At baseline, patient preferences for use of tracheostomy and p ercutaneous endoscopic gastrostomy (PEG) placement were elicited. All patie nts received the same educational information before being interviewed abou t treatment preferences. Patients were then followed to determine if patien ts who viewed the interventions favorably at baseline were significantly mo re likely to use the interventions over follow-up. Results: Six to twelve p ercent of patients were certain they wanted tracheostomy and 28.2% wanted P EG. Preferences were related to later treatment choices: 20% of patients wh o found tracheostomy acceptable had one in the follow-up period, compared w ith 3.4% of those not in favor (p < 0.001). For PEG, similar findings were obtained: 48.5% who initially found it acceptable had PEG, versus 8.1% of t hose not in favor of this treatment (p < 0.001). Patients who found the int erventions acceptable were more likely to be recently diagnosed, expressed greater attachment to life, and showed greater declines in pulmonary functi on over follow-up. Conclusions: Patients with ALS were able to express thei r preferences for life-extending or ameliorative technologies and made choi ces consistent with these preferences. However, patient preferences may cha nge over time, and clinical education efforts are required throughout the c ourse of disease.