title: Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study.
abstract: BACKGROUND
  The multidisciplinary approach in the management of Amyotrophic Lateral Sclerosis (ALS) has been shown to provide superior care to devolved care, with better survival, improved quality of care, and quality of life. Access to expert multidisciplinary management should be a standard for patients with ALS. This analysis explores the patient journey from symptom onset and first engagement with health services, to the initial visit to a specialist ALS Multidisciplinary Clinic (MDC) in Dublin, Ireland.
  
  
  METHODS
  A retrospective exploratory multi-method study details the patient journey to the MDC. Data from medical interviews and systematic chart review identifies interactions with the health services and key timelines for thirty five new patients presenting with a diagnosis of ALS during a 6 month period in 2013.
  
  
  RESULTS
  The time from first symptom to diagnosis was a mean of 16 months (median 13 months), with a mean interval of 19 months (median 14.6) from first symptoms to arrival at the MDC. The majority of patients were seen by a general practitioner, and subsequently by neurology services. There was an average of four contacts with health services and 4.8 investigations/tests, prior to their first Clinic visit. On the first visit to the MDC patients are linked into an integrated 'system' that can provide specialist care and link with voluntary, palliative and community services as required.
  
  
  CONCLUSIONS
  Engagement with a multidisciplinary team has implications for service utilization and quality of life of patients and their families. We have demonstrated that barriers exist that delay referral to specialist services. Comprehensive data recording and collection, using multiple data sources can reconstruct the timelines of the patient journey, which can in turn be used to identify pathways that can expedite early referral to specialist services.
authors.affiliation: School of Nursing and Human Sciences, Dublin City University, Dublin 9, Ireland. miriam.galvin@dcu.ie.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. miriam.galvin@dcu.ie.
authors.forename: M
authors.initials: M
authors.lastname: Galvin
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. MADDENC4@tcd.ie.
authors.forename: C
authors.initials: C
authors.lastname: Madden
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. smaguire@rcsi.ie.|Department of Neurology, National Neuroscience Centre, Beaumont Hospital, Dublin 9, Ireland. smaguire@rcsi.ie.
authors.forename: S
authors.initials: S
authors.lastname: Maguire
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. Mark.Heverin@tcd.ie.
authors.forename: M
authors.initials: M
authors.lastname: Heverin
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. vajdaa@tcd.ie.
authors.forename: A
authors.initials: A
authors.lastname: Vajda
authors.affiliation: School of Nursing and Human Sciences, Dublin City University, Dublin 9, Ireland. anthony.staines@dcu.ie.
authors.forename: A
authors.initials: A
authors.lastname: Staines
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland. HARDIMAO@tcd.ie.|Department of Neurology, National Neuroscience Centre, Beaumont Hospital, Dublin 9, Ireland. HARDIMAO@tcd.ie.
authors.forename: O
authors.initials: O
authors.lastname: Hardiman
mesh_terms: D000328:Adult; D000368:Aged; D000553:Ambulatory Care / Q000706:statistics & numerical data*; D000554:Ambulatory Care Facilities / Q000706:statistics & numerical data; D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007494:Ireland; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data; D011788:Quality of Life; D012017:Referral and Consultation / Q000706:statistics & numerical data; D012189:Retrospective Studies; D061665:Time-to-Treatment