To assess palliation topic preferences amongst ALS patients attending a multidisciplinary clinic.

Amyotrophic Lateral Sclerosis (ALS), is a rapidly progressive, neurodegenerative disease.  Advanced care planning (ACP), palliation, and psychosocial needs must be discussed early. Literature recommends introducing palliation at dynamic points in a multidisciplinary clinic; however, this is inconsistently practiced. There are no guidelines for when, with whom, or how palliation is discussed. Our QI study surveyed patients at our ALS clinic to assess palliative needs and preferences.

A nine question survey was given to 30 ALS patients attending a multidisciplinary clinic over one year. Descriptive statistics were performed.

30 patients (15 males 27 Caucasians, mean age 66, age range 51-84) enrolled. Patients were “very open” to their provider discussing: ACP 21(70%), planning for when more help is likely needed 20(66.7%), likely disease complications 19(63.3%), end-of-life discussion 20(66.7%). 14(50%) patients ranked planning for when more help is likely needed as most important. 20(71%) patients chose “my neurologist” as their preferred healthcare provider to initiate topics. 17(61%) patients preferred their physician to present topics. 16(53%) patients wanted their neurologists to decide to initiate these topics. Partial correlations showed a positive significant correlation between the ALS-FRS score and importance of discussing life complications (p=0.08, r=0.539) and a trending negative correlation between the ALS-FRS  score  and discussing end of life care (p=0.051, r=0.411).

ALS patients want to plan for their future. ACP, needing more help, and end-of-life discussions were ranked highest.  Scoring higher on the ALS-FRS is associated with less impairment leading to planning for complications and also less likely to discuss advanced directives until disease progression. Our patients want initiation and discussion by their neurologist, this may be a selection bias, as other providers are unavailable in our clinic. By understanding our patients’ preferences we hope to appropriately introduce this service.