To characterize the care preferences and the adherence to American Academy of Neurology (AAN) care parameters across multidisciplinary care models (MDC) for people living with ALS (PALS).

The AAN recently released six quality measures for care of people living with ALS. Previously published practice parameters outlined eleven recommended quality measures.  Both sets of recommendations include multidisciplinary care, but neither recommend specific delivery models. MDC models include: non-triage, triage and traditional/ referral.

PALS and their caregivers (CALS) were recruited from the National ALS Registry, Everything ALS, Voices ALS and the NEALS PEACe committee. English-speaking respondents with a confirmed or presumed ALS diagnosis completed a cross-sectional, online survey. Survey questions included information about demographics, preferences for care and AAN practice parameters as described by Miller et. al.  At the time of this survey, the recently published quality measures were not available.

The sample (n=364) consists of 66.76% PALS and 33.24% CALS distributed across non-triage (86.81%), triage (5.49%) and referral (7.69%) clinics.  The mean age for respondents was 60.41 years old.  Respondents came from 46 states, were 93% Caucasian, 55% female and 76.7% college educated. The average normed ROADS score was 71.95 (SD=23.14). If given the choice, 88% of PALS would be extremely likely to choose to receive care in a non-triage clinic.  PALS receiving care in non-triage clinics reported more frequent attention to previously published AAN practice parameters in all areas except medications.  Furthermore, only 50% of non-triage clinics offered help with end-of-life planning.

Our findings highlight PALS prefer non-triage care. Generally, non-triage clinics adhere to previously published AAN quality measures more than other care models.  Multidisciplinary care remains a cornerstone of care for PALS and is included in the recently updated AAN Quality Measures.