RESUMEN
Therapeutic patient education (TPE) is the process by which health professionals impart information to help patients self-manage their chronic disease: it is an essential part of treatment of long-term diseases and conditions. Memory loss and other cognitive disorders are usually considered as obstacles to TPE for patients with Alzheimer's disease or related disorders (ADRD). Over 100 patients with different forms of ADRD and caregivers have benefited from TPE programs since 2011 at the Limoges University Clinical and Research Memory Center. Participants report better understanding of the disease and improved relationships. TPE may prevent anxiety and depression in patient and in caregivers, and reduce burden of caregivers. General guidelines and perspectives for TPE in ADRD are outlined.
Asunto(s)
Enfermedad de Alzheimer/complicaciones , Enfermedad de Alzheimer/terapia , Educación del Paciente como Asunto , Automanejo/educación , Anciano , Anciano de 80 o más Años , Enfermedad de Alzheimer/epidemiología , Cuidadores/educación , Cuidadores/psicología , Enfermedad Crónica , Costo de Enfermedad , Femenino , Francia/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente/estadística & datos numéricos , Factores Socioeconómicos , Encuestas y CuestionariosRESUMEN
PURPOSE: Quality of life (QoL) in multiple system atrophy (MSA) is thought to be poorer than in Parkinson's disease (PD), primarily because of motor impairment, autonomic dysfunction and depression. The aim of the study was to investigate QoL in 10 patients with probable MSA (parkinsonian subtype) compared with 10 PD patients matched for motor disability on UPDRS III motor score. METHODS: All patients were ambulatory and non-demented. Mean durations of disease in MSA and PD patients were respectively 3.6 and 9.0 years. QoL was assessed using the SF-36 health-related questionnaire and a life satisfaction visual analogue scale. Patients were also evaluated for cognitive function (Mattis Dementia Rating Scale [Mattis DRS], Wisconsin Card Sorting Test [WCST], Stroop, Fluencies), depression (Beck Depression Inventory-II [BDI-II]), apathy (Modified Apathy Evaluation Scale) and were screened for non-motor symptoms (NMS Quest). RESULTS: The only difference in QoL between MSA and PD patients matched for motor disability was that the SF-36 vitality subscore was more impaired in MSA and negatively correlated with interference index on Stroop word colour testing. Depression and non-motor symptoms were associated with poorer QoL in both groups. Among MSA patients, cognitive impairment (Stroop interference index) and apathy also had a negative impact. CONCLUSION: There was no major difference in QoL between MSA and PD patients matched for motor disability with a disease duration about 5 years longer. The SF-36 vitality subscore was more impaired in MSA and associated with interference sensitivity.