Developing multidisciplinary clinics for neuromuscular care and research

Paganoni, Sabrina; Nicholson, Katie; Leigh, Fawn; Swoboda, Kathryn J.; Chad, David A.; Drake, Kristin; Haley, Kellen; Cudkowicz, Merit; Berry, James

doi:10.1002/mus.25725

Cited by 45 publications

(41 citation statements)

References 72 publications

(172 reference statements)

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“…All recommendations focus on a multidisciplinary approach for the care of patients with ALS; this has proved to be effective, but this model of care may not be fully reimbursed in the United States. 54,55 Telemedicine is emerging as a complement to the current center-based care model. 56 Until recently, disease-modifying therapies for ALS have been limited to riluzole, a glutamate release inhibitor approved for the treatment of ALS in 1995.…”

Section: Clinical Carementioning

confidence: 99%

Amyotrophic Lateral Sclerosis: An Update for 2018

Oskarsson

Gendron

Staff

2018

Mayo Clinic Proceedings

262

178

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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease affecting motor neurons and other neuronal cells, leading to severe disability and eventually death from ventilatory failure. It has a prevalence of 5 in 100,000, with an incidence of 1.7 per 100,000, reflecting short average survival. The pathogenesis is incompletely understood, but defects of RNA processing and protein clearance may be fundamental. Repeat expansions in the chromosome 9 open reading frame 72 gene (C9orf72) are the most common known genetic cause of ALS and are seen in approximately 40% of patients with a family history and approximately 10% of those without. No environmental risk factors are proved to be causative, but many have been proposed, including military service. The diagnosis of ALS rests on a history of painless progressive weakness coupled with examination findings of upper and lower motor dysfunction. No diagnostic test is yet available, but electromyography and genetic tests can support the diagnosis. Care for patients is best provided by a multidisciplinary team, and most interventions are directed at managing symptoms. Two medications with modest benefits have Food and Drug Administration approval for the treatment of ALS: riluzole, a glutamate receptor antagonist, and, new in 2017, edaravone, a free radical scavenger. Many other encouraging treatment strategies are being explored in clinical trials for ALS; herein we review stem cell and antisense oligonucleotide gene therapies.

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Section: Clinical Carementioning

confidence: 99%

Amyotrophic Lateral Sclerosis: An Update for 2018

Oskarsson

Gendron

Staff

2018

Mayo Clinic Proceedings

262

178

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“…Although advocacy is a recognized by-product of neuromuscular MDC, 14 this is the first study to demonstrate that patients view the advocacy potential of a MDC ALS clinic as a benefit. This could be due to the fact that our MDC is a fledgling clinic, and patients recognize the importance of its development.…”

Section: Discussionmentioning

confidence: 84%

Patient perspectives on transitioning to amyotrophic lateral sclerosis multidisciplinary clinics

Schellenberg¹,

Hansen²

2018

JMDH

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PurposeMultidisciplinary clinics (MDC) have become the standard of care for management of amyotrophic lateral sclerosis (ALS). No studies however, have captured patients’ perspectives during a transition to ALS MDCs. Recently, an ALS MDC emerged from a single-physician clinic in Saskatoon, Canada, providing patients with a unique exposure to two different models of care.Patients and methodsFifteen patients with ALS participated in semi-structured interviews that were digitally recorded and transcribed. Two independent researchers performed an inductive thematic analysis. Information was coded based on emerging and a priori themes. An iterative process followed involving discussion and reexamination of the themes until consensus was reached.ResultsAll patients cited the convenience of integrated care as an advantage. Other advantages included clinical expertise and advocacy potential. Travel and reduced mobility were the most commonly discussed barriers/disadvantages of MDC attendance. The impact of geography and weather appeared to augment both the appreciation of an integrated approach and the impediment of travel, compared to the existing literature. The need for individualized care was demonstrated by the conflicting viewpoints obtained from participants. Most patients felt additional practitioners and supports for both patients and caregivers were required.ConclusionALS patients transitioned to MDCs reported many of the advantages and disadvantages reported elsewhere. A novel perspective of a MDC’s advocacy potential was recognized, and the need for an innovative approach to meet demands for individualized care was highlighted.

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“…En France, et en dépit du projet de dossier médical partagé (DMP) engagé dès 2004, le dossier patient se conjugue encore au pluriel, constitué d'un ou plusieurs dossiers numérisés, propre(s) à un médecin, à un hôpital ou à un groupe hospitalier dans le meilleur des cas, et de plusieurs dossiers papier surchargés au fil des consultations et des examens, nombreux dans les maladies neuromusculaires. [2]. La télémédecine permet au contraire de prendre soin du patient au plus près de son lieu de vie (domicile, cabinets médicaux et établissements de santé de proximité).…”

Section: Un Suivi Continu Et Coordonnéunclassified

“…Les obstacles rencontrés tiennent aux spécificités de ces maladies rares, encore souvent mal connues, chroniques et nécessitant pour la plupart des soins lourds. Leur prise en charge optimale se veut multidisciplinaire et spécialisée, considérée à juste titre comme un « gold standard » [1,2]. Elle repose sur un petit nombre d'experts hospitaliers, Un colloque dédié Le 19 janvier 2018, le centre de référence des maladies neuromusculaires de Nice, l'European Reference Networks, la filière de santé maladies rares neuromusculaires Filnemus, la filière de santé sclérose latérale amyotrophique et maladies du neurone moteur Filslan, le CHU de Nice et l'AFM-Téléthon ont organisé à Nice la première Journée d'information sur la e-santé au service des maladies chroniques neuromusculaires et neurogénétiques.…”

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