title: The potential of disease management for neuromuscular hereditary disorders.
abstract: Neuromuscular hereditary disorders require long-term multidisciplinary rehabilitation management. Although the need for coordinated healthcare management has long been recognized, most neuromuscular disorders are still lacking clinical guidelines about their long-term management and structured evaluation plan with associated services. One of the most prevalent adult-onset neuromuscular disorders, myotonic dystrophy type 1, generally presents several comorbidities and a variable clinical picture, making management a constant challenge. This article presents a healthcare follow-up plan and proposes a nursing case management within a disease management program as an innovative and promising approach. This disease management program and model consists of eight components including population identification processes, evidence-based practice guidelines, collaborative practice, patient self-management education, and process outcomes evaluation (Disease Management Association of America, 2004). It is believed to have the potential to significantly improve healthcare management for neuromuscular hereditary disorders and will prove useful to nurses delivering and organizing services for this population.
authors.affiliation: Université du Québec a Chicoutimi, Québec, Canada.
authors.forename: Maud-Christine
authors.initials: MC
authors.lastname: Chouinard
authors.forename: Cynthia
authors.initials: C
authors.lastname: Gagnon
authors.forename: Luc
authors.initials: L
authors.lastname: Laberge
authors.forename: Carmen
authors.initials: C
authors.lastname: Tremblay
authors.forename: Charlotte
authors.initials: C
authors.lastname: Côté
authors.forename: Nadine
authors.initials: N
authors.lastname: Leclerc
authors.forename: Jean
authors.initials: J
authors.lastname: Mathieu
mesh_terms: D002170:Canada; D019468:Disease Management; D006801:Humans; D017146:Models, Organizational; D009223:Myotonic Dystrophy / Q000451:nursing / Q000534:rehabilitation*; D010348:Patient Care Team / Q000458:organization & administration; D017410:Practice Guidelines as Topic; D016730:Program Development; D019145:Rehabilitation Nursing