ArticleBMC health services research2015
Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study.
Article in BMC health services research, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 2 syntheses or guidelines pooled it, 44 citations in OpenAlex.
- Capturing Real-World Rare Disease Patient Journeys: Are Current Methodologies Sufficient for Informed Healthcare Decisions?Journal of evaluation in clinical practice · 2025Pooled it
- Definition and conceptualization of the patient-centered care pathway, a proposed integrative framework for consensus: a Concept analysis and systematic review.BMC health services research · 2022Pooled it
- Multidisciplinary clinic attendance and patterns of care in the U.S. National ALS Registry, 2013-2023.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2026Article
- A Qualitive Investigation of Geographic Disparities in Genetic Testing and Care Access for Amyotrophic Lateral Sclerosis: Insights From Patient Journey Mapping.Patient preference and adherence · 2026Article
- 'Finally, in Hands I Can Trust': Perspectives on Trust in Motor Neurone Disease Care.Healthcare (Basel, Switzerland) · 2025Article
- Connecting Care Closer to Home: Evaluation of a Regional Motor Neurone Disease Multidisciplinary Clinic.Healthcare (Basel, Switzerland) · 2025Article
- Health care resource utilization and costs across stages of amyotrophic lateral sclerosis in the United States.Journal of managed care & specialty pharmacy · 2024Article
- Hypercapnia is not excluded by normoxia in neuromuscular disease patients: implications for oximetry.ERJ open research · 2024Article
- The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.Breathe (Sheffield, England) · 2023Review
- Iranian clinical practice guideline for amyotrophic lateral sclerosis.Frontiers in neurology · 2023Review
- Effect of neurofilament analysis on the diagnostic delay in amyotrophic lateral sclerosis.CNS neuroscience & therapeutics · 2023Article
- Reporting and conducting patient journey mapping research in healthcare: A scoping review.Journal of advanced nursing · 2023Article
- The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study.BMC palliative care · 2020Article
- A spatial analysis of amyotrophic lateral sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics, 2013.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2018Article
- Decision-making and referral processes for patients with motor neurone disease: a qualitative study of GP experiences and evaluation of a new decision-support tool.BMC health services research · 2017Article
- Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival.Journal of neurology · 2017Article
- Article
- Positron emission tomography in amyotrophic lateral sclerosis: Towards targeting of molecular pathological hallmarks.European journal of nuclear medicine and molecular imaging · 2017Review
- Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach.Journal of multidisciplinary healthcare · 2017Review
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsA 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.
resultsThe 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.
conclusionsEngagement 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.