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Purpose: The purpose of this study was to examine the route to diagnosis of persons with Amyotrophic Lateral Sclerosis (ALS) in Nova Scotia. Methods: Nova Scotia clients of the ALS Society of New Brunswick and Nova Scotia described their perspective on their route to a firm diagnosis of ALS, including processes that worked effectively as well as barriers to expedited care. Clients were selected from all who had been diagnosed in the previous two years and who were able and will- ing to participate in the interview. Results: Fifteen interviews were completed. From two to 42 months elapsed between the time of initial symptoms and firm diagnosis of ALS being made. The path to diagnosis was ≤6 months for five individuals and was ≥18 months for five others. Mean duration of time elapsed between the first symptoms and the firm diagnosis was 14.4 months with a median of 11 months. Conclusions: Persons with ALS in Nova Scotia have similar paths to diagnosis compared to those in other countries. Considerable delays occurred in persons with initial bulbar symptoms and in those cases where ALS was not con- sidered a diagnostic possibility early in the course, due to lack of provider awareness or atypical initial symptoms and signs.

The path to diagnosis for persons with ALS in Nova Scotia