Maud-Christine Chouinard, PhD RN, is a professor in module des sciences infirmières et de la santé at the Université du Québec à Chicoutimi in Québec, Canada, and researcher at the Neuromuscular Clinic of the Centre de Santé et de Services Sociaux de Jonquière in Québec, Canada.
The Potential of Disease Management for Neuromuscular Hereditary Disorders
Version of Record online: 27 MAR 2012
2009 Association of Rehabilitation Nurses
Volume 34, Issue 3, pages 118–126, May-June 2009
How to Cite
Chouinard, M.-C., Gagnon, C., Laberge, L., Tremblay, C., Côté, C., Leclerc, N. and Mathieu, J. (2009), The Potential of Disease Management for Neuromuscular Hereditary Disorders. Rehabilitation Nursing, 34: 118–126. doi: 10.1002/j.2048-7940.2009.tb00266.x
- Issue online: 27 MAR 2012
- Version of Record online: 27 MAR 2012
- disease management;
- myotonic dystrophy;
- neuromuscular disorders;
- nursing care delivery systems;
- practice guidelines
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.