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1.
BMC Neurol ; 10: 88, 2010 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-20929556

RESUMO

BACKGROUND: There is a need for greater understanding of the impact of multiple sclerosis (MS) from the perspective of individuals with the condition. The South West Impact of MS Project (SWIMS) has been designed to improve understanding of disease impact using a patient-centred approach. The purpose is to (1) develop improved measurement instruments for clinical trials, (2) evaluate longitudinal performance of a variety of patient-reported outcome measures, (3) develop prognostic predictors for use in individualising drug treatment for patients, particularly early on in the disease course. METHODS: This is a patient-centred, prospective, longitudinal study of multiple sclerosis and clinically isolated syndrome (CIS) in south west England. The study area comprises two counties with a population of approximately 1.7 million and an estimated 1,800 cases of MS. Self-completion questionnaires are administered to participants every six months (for people with MS) or 12 months (CIS). Here we present descriptive statistics of the baseline data provided by 967 participants with MS. RESULTS: Seventy-five percent of those approached consented to participate. The male:female ratio was 1.00:3.01 (n = 967). Average (standard deviation) age at time of entry to SWIMS was 51.6 (11.5) years (n = 961) and median (interquartile range) time since first symptom was 13.3 (6.8 to 24.5) years (n = 934). Fatigue was the most commonly reported symptom, with 80% of participants experiencing fatigue at baseline. Although medication use for symptom control was common, there was little evidence of effectiveness, particularly for fatigue. Nineteen percent of participants were unable to classify their subtype of MS. When patient-reported subtype was compared to neurologist assessment for a sample of participants (n = 396), agreement in disease sub-type was achieved in 63% of cases. There were 836 relapses, reported by 931 participants, in the twelve months prior to baseline. Twenty-three percent of the relapsing-remitting group and 12% of the total sample were receiving disease-modifying therapy at baseline. CONCLUSIONS: Demographics of this sample were similar to published data for the UK. Overall, the results broadly reflect clinical experience in confirming high symptom prevalence, with relatively little complete symptom relief. Participants often had difficulty in defining MS relapses and their own MS type.


Assuntos
Esclerose Múltipla , Avaliação de Resultados em Cuidados de Saúde/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/tratamento farmacológico , Esclerose Múltipla/fisiopatologia , Adulto Jovem
2.
Pediatr Crit Care Med ; 3(4): 351-4, 2002 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-12780953

RESUMO

OBJECTIVE: To compare the overall performance of specially trained neonatal nurses acting autonomously, unsupervised, and without a protocol with specialist registrars when weaning neonates from mechanical ventilation. DESIGN: Prospective, randomized, controlled trial. SETTING: A single neonatal intensive care unit. PATIENTS: Neonates requiring conventional mechanical ventilation (n = 50). INTERVENTIONS: Infants on conventional ventilation were randomly assigned to receive either nurse-led (n = 25) or registrar-led (n = 23) weaning. A total of 48 infants completed the study (two infants in the registrar group were excluded when their parents withdrew consent). MEASUREMENTS AND MAIN RESULTS: The main outcome measure, median weaning time, was 1200 mins (95% confidence interval [CI], 621-1779 mins) in the nurse group and 3015 mins (95% CI, 2650-3380 mins) in the registrar group (p = .0458). The median time from treatment assignment to the first ventilator change was 60 mins (95% CI, 52-68 mins) in the nurse group and 120 mins (95% CI, 103-137 mins) in the registrar group (p = .35). On average, the nurses made ventilator changes every 4.5 hrs (95% CI, 2.9-6 hrs) and the registrars every 7.2 hrs (95% CI, 5.4-9 hrs; p = .003). The median number (range) of backward steps taken per infant was 0 (0-5 steps) in the nurse group and 1 (0-5 steps) in the registrar group (p = .019). CONCLUSIONS: The findings of this study suggest that additional domains of neonatal critical care could be reviewed for their potential transfer to appropriately prepared nurses.

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