The Path to Specialist Multidisciplinary Care: A Population Based Study of Consultations, Interventions and Costs

Objective: To examine the path to specialist multidisciplinary ALS care from the time of first symptom to presentation at a multidisciplinary clinic (MDC). Background: Amyotrophic Lateral Sclerosis (ALS) is a devastating neurological condition that requires coordinated, multidisciplinary clinical management. ALS is prone to misdiagnosis as its signs and symptoms may be nonspecific, which may prolong patients’ journey to multidisciplinary ALS care. Design/Methods: Using data from a detailed chart review and national register, we have detailed the journey of a national cohort of ALS patients from the time of first symptom to presentation at an MDC. Key milestones were analysed, including frequency of consultations, clinical interventions, and associated economic cost. Results: Details of 155 patient journeys were tracked. A majority was male (60%), 65 years of age and over (54%), with 72% of spinal onset. Time from onset of first symptoms to ALS diagnosis was a mean of 15.1 months (median, 11). There was a mean interval of 17.4 months (median 12.5) from first symptoms to arrival at the MDC, and a mean of 4.09 (median, 4) consultations with health care professionals. Electromyography and nerve conduction studies were among the most common interventions. Direct referral by a General Practitioner to a neurologist was associated with reduced cost, but not reduced diagnostic delay. Bulbar ALS was associated with shorter time from symptom onset to diagnosis. Neurologist consultation in the first three consultations was associated with lower costs prior to the ALS clinic attendance but not a shorter time from first symptom to diagnosis. Mean cost prior to attending the MDC was €3,486 per patient. Expedited referral to the ALS clinic could have reduced costs by an estimated €2,072 per patient. Conclusions: Development of a standardised pathway with early referral to neurology of patients with suspected symptoms of ALS could limit unnecessary interventions and reduce cost of care. Study Supported by: This research was supported by funding from the Irish Health Research Board Dublin as part of the HRB Interdisciplinary Capacity Enhancement Awards. Disclosure: Dr. Galvin has nothing to disclose. Dr. Ryan has nothing to disclose. Dr. Maguire has nothing to disclose. Dr. Heverin has nothing to disclose. Dr. Madden has nothing to disclose. Dr. Vajda has nothing to disclose. Dr. Normand has nothing to disclose. Dr. Hardiman has received royalty payments from the Royal College of Surgeons in Ireland.