Experience with a new surrogate consent system for patients with Alzheimer's disease is reviewed.
It was hypothesized that as patients'cognitive status deteriorated, surrogate consent through a durable power of attorney would become necessary to facilitate continued involvement in clinical research.
The authors retrospectively reviewed the charts of in patients with Alzheimer's disease who participated in research between January 1989 and December 1994 at the Geriatric Psychiatry Unit of the National Institute of Mental Health.
The main outcome measures were the Clinical Dementia Rating, Global Deterioration Scale for primary degenerative dementia, and Mini-Mental State.
Most patients were in the mild-to-moderate stage of the illness when they chose to participate in research and assign a durable power of attorney (96% scored 2 or less on the Clinical Dementia Rating, and 92% scored or less on the Global Deterioration Scale).
On average, the subjects participated in 3.8 (SD=2.6) studies.
For 35 patients with multiple admissions over this period (average=3.1 years), scores on the Clinical Dementia Rating and Global Deterioration Scale declined by 1.0 and 1.5 points, respectively.
The durable power of attorney allows research participation for subjects with Alzheimer's disease at all stages. (...)
Mots-clés Pascal : Démence Alzheimer, Recherche scientifique, Expérimentation, Participation, Consentement éclairé, Aptitude, Détérioration intellectuelle, Ethique, Etats Unis, Amérique du Nord, Amérique, Homme, Système nerveux pathologie, Système nerveux central pathologie, Encéphale pathologie, Maladie dégénérative
Mots-clés Pascal anglais : Alzheimer disease, Scientific research, Experimentation, Participation, Informed consent, Ability, Intellectual deterioration, Ethics, United States, North America, America, Human, Nervous system diseases, Central nervous system disease, Cerebral disorder, Degenerative disease
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 98-0243655
Code Inist : 002B30A09. Création : 11/09/1998.