OBJECTIVES: To evaluate stroke patients9 satisfaction with care received and to identify characteristics of patients and care which are associated with patients9 dissatisfaction. DESIGN: Cross sectional study. SETTING: Sample of patients who participated in a multicentre study on quality of care in 23 hospitals in the Netherlands. PATIENTS: 327 non-institutionalised patients who had been in hospital six months before because of stroke. MAIN MEASURES: Data were collected on (a) characteristics of patients: socio-demographic status, cognitive function (mini mental state examination), disability (Barthel index), handicap (Rankin scale), emotional distress (emotional behavior subscale of the sickness impact profile) and health perception; (b) characteristics of care: use of various types of formal care after stroke, unmet care demands perceived by patients, unmet care demands confirmed by their general practitioners, continuity of care, and secondary prevention, and (c) patients9 satisfaction with care received. RESULTS: 40% of the study sample were dissatisfied with at least one type of care received. Multivariate analyses showed that unmet care demands perceived by patients (odds ratio (OR) 3.2, 95% confidence interval (95% CI) 1.8-5.7) and emotional distress (OR 1.8, 95% CI 1.1-3.0) were the main variable associated with dissatisfaction. CONCLUSIONS: Patients9 satisfaction was primarily associated with emotional distress and unmet care demands perceived by patients. No association was found between patients9 satisfaction on the one hand and continuity of care or secondary prevention on the other; two care characteristics that are broadly accepted by professional care givers as important indicators of quality of long term care after stroke. IMPLICATIONS: In view of these findings discussion should take place about the relative weight that should be given to patients9 satisfaction as an indicator of quality of care, compared with other quality indicators such as continuity of care and technical competence. More research is needed to find which dimensions of quality care are considered the most important by stroke patients and professional care givers.
To develop a prognostic model to predict disease outcomes in individual patients with Parkinson disease (PD) and perform an external validation study in an independent cohort.Model development was done in the Comorbidity and Aging in Rehabilitation Patients: The Influence on Activities (CARPA) cohort (Netherlands). External validation was performed using the Cambridgeshire Parkinson's Incidence from GP to Neurologist (CamPaIGN) cohort (UK). Both are longitudinal incident cohort studies that prospectively followed up patients with PD from the time of diagnosis. A composite outcome measure was made in which patients were classified as having an unfavorable prognosis when they had postural instability or dementia at the 5-year assessment (or at the last assessment before loss to follow-up), or had died before this time. The final model was derived with a backward selection strategy from candidate predictor variables that were measured at baseline.In the resulting model, higher patient age, higher Unified Parkinson's Disease Rating Scale motor examination axial score, and a lower animal fluency score were all associated with a higher probability of an unfavorable outcome. External validation confirmed good discriminative ability between favorable and unfavorable outcomes with an area under the receiver operating characteristic curve of 0.85 (95% confidence interval 0.77-0.93) and a well-calibrated model with a calibration slope of 1.13 and no significant lack of fit (Hosmer-Lemeshow test: p = 0.39).We constructed a model that allows individual patient prognostication at 5 years from diagnosis, using a small set of predictor variables that can easily be obtained by clinicians or research nurses.
Esophagectomy with gastric tube reconstruction results in a variety of postoperative nutrition-related symptoms that may influence the patient's nutritional status.We developed a 15-item questionnaire, focusing on the nutrition-related complaints the first year after an esophagectomy. The questionnaire was filled out the first week after discharge and 3, 6, and 12 months after surgery. The use of enteral nutrition, meal size and frequency, social aspects related to eating, defecation pattern, and body weight were recorded at the same time points. We analyzed the relationship between the baseline characteristics and the number of nutrition-related symptoms, as well as the relationship between those symptoms and body weight with linear mixed models.We found no significant within-patient change for the total number of nutrition-related symptoms (P = 0.67). None of the baseline factors were identified as predictors of the complaint scores. The most frequently experienced complaints were early satiety, postprandial dumping syndrome, inhibited passage due to high viscosity, reflux, and absence of hunger. One year after surgery, meal sizes were still smaller, the social aspects of eating were influenced negatively, and patients experienced an altered stool frequency. Directly after the surgical procedure 78% of the patients lost weight, and the entire postoperative year the mean body weight remained lower (P = 0.47). We observed no association between the complaint scores and body weight (P = 0.15).After an esophagectomy, most patients struggle with nutrition-related symptoms, are confronted with nutrition-related adjustments and a reduced body weight.
In specialized movement disorder centers, Parkinson's disease (PD) is wrongly diagnosed in 6 to 25% of cases. To improve the accuracy of the clinical diagnosis, it is necessary to have a reliable and practical reference standard. Dopamine transporter single-photon emission computed tomography (DAT SPECT) imaging might have the potential (high diagnostic accuracy and practical to use) to act as reference standard in detecting nigrostriatal cell loss in patients with (early stage) parkinsonism. We performed a systematic review to evaluate if DAT SPECT imaging can be used as such. Relevant studies were searched in the MEDLINE and EMBASE databases. Studies were selected when they met the following criteria: (1) all patients were adults with a clinical diagnosis of PD or clinically uncertain parkinsonism and (2) the study reported original data. In addition, studies needed to fulfill one of the two following criteria: (1) patients underwent at least one DAT SPECT and had a neuropathological confirmed diagnosis and (2) patients underwent at least two DAT SPECT scans, performed at least 2 years apart. The search identified 1,649 articles. Eight studies fulfilled our selection criteria and were included in this review. There was only one study including patients with diagnostic uncertainty. Sensitivity and specificity of DAT SPECT imaging to detect nigrostriatal cell loss were 98%. The other studies included patients with a diagnosis of PD in whom there was no uncertainty. In these studies, sensitivity was 100%. Our systematic review indicates that DAT SPECT imaging seems to be accurate to detect nigrostriatal cell loss in patients with parkinsonism.
The Unified Parkinson's Disease Rating Scale (UPDRS) is widely used for the clinical evaluation of Parkinson's disease (PD). We assessed the rater variability of the UPDRS Motor examination (UPDRS-ME) of nurse practitioners, residents in neurology, and a movement disorders specialist (MDS) compared to a senior MDS. We assessed the videotaped UPDRS-ME of 50 PD patients. Inter-rater and intra-rater variability were estimated using weighted kappa (kappa(w)) and intraclass correlation coefficients (ICC). Additionally, inter-rater agreement was quantified by calculation of the mean difference between 2 raters and its 95% limits of agreement. Intra-rater agreement was also estimated by calculation of a 95% repeatability limits. The kappa(w) and ICC statistics indicated good to very good inter-rater and intra-rater reliability for the majority of individual UPDRS items and the sum score of the UPDRS-ME in all raters. However, for inter-rater agreement, it appeared that both nurses, residents, and the MDS consistently assigned higher scores than the senior MDS. Mean differences ranged between 1.7 and 5.4 (all differences P < 0.05), with rather wide 95% limits of agreement. The intra-rater 95% repeatability limits were rather wide. We found considerable rater difference for the whole range of UPDRS-ME scores between a senior MDS and nurse practitioners, residents in neurology, and the MDS. This finding suggests that the amount by which raters may disagree should be quantified before starting longitudinal studies of disease progression or clinical trials. Finally, evaluation of rater agreement should always include the assessment of the extent of bias between different raters.
