Disease management: the example of amyotrophic lateral sclerosis

Abstract

Disease management is defined as any medical or pharmaceutical intervention designed to improve both outcomes for the patient and overall cost-effectiveness of the health plan. Disease management focuses on the patient throughout the entire course of the disease, involving both health providers and third-party payers. It requires structured management of change, inter- and intra-professional communication and access to information, identification of pertinent economic and clinical outcomes, and the establishment of guidelines, computerized systems and quality assurance. The concept of disease management remains controversial, primarily because its effectiveness is untested. Furthermore, if only economic outcomes are considered, ethical problems such as the selection of populations (for example, the exclusion from health care of people deemed ‘too old’) will emerge. As a model of neurodegenerative disease, amyotrophic lateral sclerosis (ALS) is a suitable condition for disease management. Many possible targets for disease management initiatives in ALS can be defined, including training, communication, education, guidelines for diagnosis, follow-up, clinical trials and treatments. Medico-economic studies need to be improved if accreditation is planned. Much remains to be done to improve the therapy and disease management of ALS. However, the identification of optimal treatment will improve care of ALS patients, particularly in less affluent countries.