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Titolo:
The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe
Autore:
Jenkinson, C; Fitzpatrick, R; Swash, M; Peto, V;
Indirizzi:
Univ Oxford, Inst Hlth Sci, Div Publ Hlth & Primary Hlth Care, Hlth Serv Res Unit, Oxford OX3 7LF, England Univ Oxford Oxford England OX3 7LF erv Res Unit, Oxford OX3 7LF, England Univ London, Univ London Queen Mary & Westfield Coll, St Bartholomews & Royal London Hosp, Sch Med & Dent,Dept Neurol, London E1 1BB, England Univ London London England E1 1BB nt,Dept Neurol, London E1 1BB, England
Titolo Testata:
JOURNAL OF NEUROLOGY
fascicolo: 11, volume: 247, anno: 2000,
pagine: 835 - 840
SICI:
0340-5354(200011)247:11<835:TAHPSQ>2.0.ZU;2-Q
Fonte:
ISI
Lingua:
ENG
Soggetto:
OF-LIFE; SURVEY SF-36; SURVEY QUESTIONNAIRE; VERSION; DISEASE; ADULTS; TESTS;
Keywords:
motor neurone disease; amyotrophic lateral sclerosis; SF-36; Carer Strain Index; quality of life;
Tipo documento:
Article
Natura:
Periodico
Settore Disciplinare:
Life Sciences
Citazioni:
28
Recensione:
Indirizzi per estratti:
Indirizzo: Jenkinson, C Univ Oxford, Inst Hlth Sci, Div Publ Hlth & Primary Hlth Care, Hlth Serv Res Unit, Oxford OX3 7LF, England Univ Oxford Oxford England OX3 7LF Oxford OX3 7LF, England
Citazione:
C. Jenkinson et al., "The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe", J NEUROL, 247(11), 2000, pp. 835-840

Abstract

The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assess; ment of health and the evaluation of treatment regimes. The past decade has seen an enormousgrowth in the application of measures designed to assess quality of life in a vast array of medical specialties. However, the use of such measures inneurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS), The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motorneurone diseases in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments arealso collected. It is intended that the information collected will providemore systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measures are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functional Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease, The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as anassociation between the emotional health status of patients and carers, and between the physical health status of patients and carers.

ASDD Area Sistemi Dipartimentali e Documentali, Università di Bologna, Catalogo delle riviste ed altri periodici
Documento generato il 29/11/20 alle ore 03:25:25