Amyotrophic Lateral Sclerosis (ALS) is a degenerative disease of the nervous system that affects selectively motor neurons causing their death and thereby atrophy and paralysis of muscles innervated, with an invariably unfavourable prognosis. ALS is included in the group of rare diseases (prevalence ≤50 cases per 100000 inhabitants), which have common problems: difficulty in arriving at correct diagnosis and subsequently communicated the conclusion promptly to the patient, complexity of care and therapeutic management of these patients. In Lombardy the attention to rare diseases is high and in this context enter diagnostic, therapeutic and care paths drawn up by specialists. The construction of these documents suggests an overall management of patients and their family and social context, requiring specific, passionate and responsible resources for the practical application. The specific document for patients with ALS has these goals: use for the disease a multidisciplinary approach, give at the patients all the available opportunities for treatment, build provincial and regional health and social networks for the round care of patients, in order to clear the sense of abandonment that they perceive. The patient’s perception of their quality of life is related more to the quality of assistance received that to the severity of the disease or degree of disability associated.
Costruzione di un percorso diagnostico, terapeutico, assistenziale per i pazienti con Sclerosi Laterale Amio-trofica in Regione Lombardia
CERONI, MAURO
2011-01-01
Abstract
Amyotrophic Lateral Sclerosis (ALS) is a degenerative disease of the nervous system that affects selectively motor neurons causing their death and thereby atrophy and paralysis of muscles innervated, with an invariably unfavourable prognosis. ALS is included in the group of rare diseases (prevalence ≤50 cases per 100000 inhabitants), which have common problems: difficulty in arriving at correct diagnosis and subsequently communicated the conclusion promptly to the patient, complexity of care and therapeutic management of these patients. In Lombardy the attention to rare diseases is high and in this context enter diagnostic, therapeutic and care paths drawn up by specialists. The construction of these documents suggests an overall management of patients and their family and social context, requiring specific, passionate and responsible resources for the practical application. The specific document for patients with ALS has these goals: use for the disease a multidisciplinary approach, give at the patients all the available opportunities for treatment, build provincial and regional health and social networks for the round care of patients, in order to clear the sense of abandonment that they perceive. The patient’s perception of their quality of life is related more to the quality of assistance received that to the severity of the disease or degree of disability associated.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
