OBJECTIVE:To construct and validate a questionnaire that could be used to investigate the clarity of the medical information received by patients and their satisfaction with it, as well as their knowledge and opinions concerning advance directives and their associated variables.METHODS:We administered a 30-item questionnaire to 157 adult patients affected by progressive neurological, oncological and nephrological diseases.RESULTS:The results indicate the good reliability and structure of the questionnaire, which identifies three factors: "information and knowledge" (alpha .91), "need for physical and mental support" (alpha .89), and "determination and decision-making capacity" (alpha .75). The amount of time dedicated to medical communication proved to be one of the variables determining the patients' knowledge of their disease and their capacity to express their needs, neither of which changed over time. The oldest patient, a man in the most advanced phase of disease, was the most fragile in expressing his needs and making decisions. Advance directives, living wills, active/passive euthanasia and therapeutic obstinacy' at most only marginally reach the cognitive and emotional sphere of the patients.CONCLUSION:Patients' needs unequivocally lead us back to the primary matrices of medical act: paying attention to patients, offering adequate time, listening to him/her concerns and asking when no question emerges. This so obvious evidence does not match with the increasingly techno-oriented attitude of health professional, who also have to guarantee more productivity in less time. The quality of medical information received by patients impacts their decision making process, particularly in the oldest people. In Italy, as well as in other countries, it is necessary to pay more attention to this issue, keeping in mind that nobody can really choose without knowing exactly what it is going to happen.
This paper outlines the main instruments and contexts of applied clinical ethics in which the ethical issues of caregiving and the figure and role of the caregiver, far from being in apparent conflict, complement and influence each other reciprocally: i.e. Informed Consent and the end of life decision making processes regarding the activation and suspension of vital support means. These in fact are the two principal areas, though there are other scenarios in which the correspondence between bioethics and caregiving would equally come to assume great importance (e.g. the doctor-patient-caregiver relationship, palliative care, the approach to suffering, terminal sedation, home care and treatments). Attention is drawn in particular to one end of life issue that is often overlooked, i.e. favoring the caregiver's presence as the time of dying draws near and at the moment of death itself, a presence that involves high emotional involvement and has a high moral impact and that can give dignity and spirituality to an event that patients usually experience in solitude and in the absence of family members and health professionals. The paper, in conclusion, highlights that in modern scenarios of the ethics of caregiving, particularly regarding the care of patients with chronic progressive diseases with negative prognosis or of patients with limited or no decisional capacity, the role of the caregiver is fundamental both as an element of balance between autonomy and beneficence and as a guarantor of the patient's best interest and of their preferences, desires and values, not to mention the contribution caregivers make to the ethical discernment and sense of responsibility of health professionals.
To assess internal consistency and validity of measures of balance (Berg balance scale, BBS), postural changes (postural changes scale, PCS) and fear of falling (fear of fall measure, FFM) in 70 ambulant Parkinson's disease (PD) persons, these instruments were matched with performance-based balance and mobility tests, and other clinical, functional and quality of life PD-specific measures. The BBS, PCS and FFM showed a good internal consistency, moderate to good inter-correlation, and a significant correlation with measures of both disability (UPDRS-ADL, Schwab and England scale) and--to a lesser extent--impairment/severity of symptoms (UPDRS-ME, Hoehn and Yahr Scale). Tandem Romberg, Single-Limb Stance, Functional Reach, and the Timed Up & Go test correlated slightly better with BBS than with PCS and FFM. This study shows that problems of balance and postural control in PD patients result from complex interactions between motor impairment, functional abilities and fear of falling.
Relatively little has been published in the international literature concerning the caregiving-related problems associated with Parkinson's disease. We therefore undertook two exploratory studies that have allowed us to identify the needs and specific problems perceived by such caregivers in both qualitative and quantitative terms.
Reports of alterations of reaction times (RTs) inParkinson’s disease are often discordant, particularly when theaim of the research is investigation of the relationship betweenlevodopa (LD) administration and RTs. Slowing of simple RT in agroup of de novo parkinsonianpatients 30–90 min after administration of LD (Madopar 250) wasrecently reported. This temporary phenomenon was attributed to asedative effect of LD. Our present study aimed to repeat theseinvestigations using Multiple Delayed Reaction Verbochronometry(MDRV). We conclude that such a slowing is not a temporaryphenomenon but may represent the increased time necessary forthe subject to adequately perform the reaction tasks.
The internal consistency (Cronbach’s alpha and item-totalcorrelation) and construct validity (factor analysis,intercorrelations, and relationship with Hoehn and Yahr stagingand Schwab and England’s ADL scale) of the sections “motorexamination” and “activities of daily living” of the UnifiedParkinson’s Disease Rating Scale (UPDRS) and of the ShortParkinson’s Evaluation Scale (SPES) were analyzed in 59 subjectswith Parkinson’s disease (PD) with various degrees ofdisability. Our results indicate that the SPES is easier andquicker than UPDRS and that it maintains many psychometricproperties similar to those of the UPDRS, but with the reductionof a number of items and ordinal levels of each item studiedhere (producing more homogenous sections than the originalversions). The tremor items would be better represented as aseparate section in both scales.
Purpose: the aim of this experimental study was to evaluate the attention modulating actions on the polysynaptic component of blink reflex responses and especially of the R3 component in patients suffering from Parkinson's Disease (PD). To this end, a non-task warning paradigm was adopted. Methods: attention processing was evaluated by means of a non-task paradigm in 55 patients suffering from PD. Subjects were presented with a visual ‘warning’ prestimulus and the blink reflex (BR) analyzed with special regard for any modulation of its polysynaptic components (R2–R3). Results: The mean amplitude of the post-warning R3 component (PW-R3c) of ‘de novo’ PD patients was 62% of the corresponding component following unannounced stimuli, a figure which differs significantly from both treated PD patients (18.9%) and control subjects (15.4%). De novo patients subsequently started on l-dopa therapy exhibited a more pronounced inhibition of the R3 component after warning stimulus, as the PW-R3c percentage decreased. Inversely, treated patients whose therapy was withheld showed decreased inhibition of this component. Regarding R2, the mean PW-R2c in the de novo patients differed slightly from that of the treated patients (P<0.05), but not from that of the control subjects. Such a finding may be attributable to a specific effects on the excitability of the polysynaptic responses. Conclusions: Attention disorders in PD have been well documented by means of this kind of non-task warning paradigm, which appears to probe the modulation of the BR R3 component, even if the interpretation of this R3 changes suggesting a specific alteration of attention processing must be put forward extremely carefully, because something similar, but less evident, appears also for R2.
The relation of symptoms to cognitive dysfunction in schizophrenia is still controversial. This study was aimed (i) at verifying if a homogeneous sample of 10 young treated outpatients in remission from psychotic symptoms displays a characteristic pattern of cognitive dysfunction and (ii) at testing the issue of a general cognitive impairment. The neuropsychological performance of the patients was confronted with a large control group by means of Equivalent Scores, a normative method widely used in Italy, which allows direct, reliable comparison between tests and between patients. We found that our patients, as a group, were affected by a basic activation deficit in attention and by a semantic impairment. These deficits in symptom-free patients could indicate that their brains are in some ways working differently from those of normal controls and that this pattern is not necessarily linked to psychotic symptoms: their neuropsychological impairment might reflect a basic difference in the way of processing information that is always present and is independent of general intellectual decay.
Background. The use of thrombolytic therapy for acute ischemic stroke is still controversial. A major problem is balancing the improvement in functional ability against the risk of early death from cerebral hemorrhage. Our aim was to assess whether patients who have had a stroke, and their proxies, would give consent to thrombolysis if this therapy were introduced into clinical practice for acute ischemic stroke in Italy. Methods:A 10-item questionnaire was administered by personnel not directly involved in the care of patients in 12 Italian hospitals. Interviews were carried out with at least 10 consecutive stroke inpatients per center in the postacute phase and to their proxies. Results: There were 685 responders (377 female), median age 58 years (range 18-98); 332 were patients and 353 proxies. Responders were representative of the Italian population as a whole as regards mean age and sex, education and marital status; 59% of responders (95% confidence interval 55-62%) would agree to thrombolysis in the case of stroke. There was more uncertainty among proxies than patients, especially when the decision had to be taken for a relative (41 vs. 17% could not decide, p < 0.001). The preference for thrombolysis was higher among more educated people (p = 0.001) and was not influenced by sex, age and marital status. Overall, 81% of responders would prefer to risk dying rather than remain severely disabled. Conclusion: Thrombolytic therapy is feasible in Italy as there is ample willingness to trade off a better functional outcome with a higher risk of death. Education is the main sociodemographic determinant of independent decision-making, as only those with an adequate cultural level are able to discriminate between one treatment option and another. The proxy's uncertainty about how to interpret a patient's preference regarding consent to thrombolytic therapy should be tackled, since proxies play a key role in making patients' preferences known in case of incompetence after an acute stroke. Copyright (C) 2001 S. Karger AG, Basel.
Recent neuropsychological, psychophysiological and neuroimaging studies have shown that specific changes in attention and information processes occur in schizophrenic disorders. A verbal delayed reaction methodology, determined by our group since 1992, has provided similar quantitative data. Visual verbal stimuli, occurring in random sequence, are presented to the subject who is requested to utter immediately the perceived word in a first trial; in a second one, a delay (foreperiod) between the word presentation and a 'go' signal (eight asterisks) is interposed. Acousticograms and orbicularis oris EMG are recorded as responses. The ratio of the 1.5-s foreperiod delayed reaction time to the immediate reaction time reveals a facilitation of the executive system occurring during sustained purposeful attention, a characteristic function of the prefrontal cortex. A further ratio, with a 0.1-s foreperiod, has been measured to investigate the effect of interference processes. These trials have been performed including 18 patients with schizophrenia, 31 with idiopathic Parkinson's disease, four patients with extrapyramidal degenerative diseases, five affected by obsessive compulsive disorder and in age-matched normal controls. Both ratios were significantly increased in schizophrenic patients and, on the contrary, decreased in patients with obsessive-compulsive disorder. These changes are in agreement with the neuroimaging findings of 'hypofrontality' in the schizophrenic patients. Verbal delayed reaction methodology seems a reliable and easily applicable tool for investigating sustained purposeful attention processes in clinical conditions.
The principal models of the physician-patient relationship are analysed in terms of their historical development. An outline is given of the clinical, psychological and ethical particularities of the approach to patients with amyotrophic lateral sclerosis. The peculiarities of this disease are so exclusive that they do not resemble other progressive diseases with a negative prognosis, and therefore require an equally exclusive approach to the physician-patient relationship. This approach should not only be informative, scientific and interpretative-deliberative, but most simultaneously be founded on a solid therapeutic alliance aimed at seeking the best interests of the patients while respecting their autonomy as well as their “good” (not only in the sense of physical well-being, but also in terms of respect for their personal values). This is the only way to confront the conflicts that inevitably arise (especially in advanced stages of the disease) without the risks associated with a desire to escape or to adopt extreme solutions (such as euthanasia and therapeutic insistence) and without the risk of burn-out.
T-Wave Amplitude (TWA) has been suggested as an indicator of sympathetic influence on myocardial performance, but critics have argued that TWA is confounded by parasympathetic influence or that it is a non-specific feature of tachycardia. To help clarify the issue, we examined TWA as a function of parasympathetic activity, using cardiac vagal control as measured by high frequency components of heart period variability (respiratory sinus arrhythmia) and of interbeat intervals (IBI), across several stressful tasks. Sixteen male subjects were exposed to Valsalva, Serial Subtraction and Cold-Pressor tasks. After controlling for between-person variance, it was found that RSA did not contribute to TWA and that IBI contributed dependably to TWA only during the Valsalva maneuver, when heart rate was driven very high. In light of these results, we recommend that TWA continue to be considered a candidate indicator of sympathetic influence on myocardial performance, although caution should be used if heart rate is dramatically elevated.
T-Wave Amplitude (TWA) has been suggested as an indicator of sympathetic influence on myocardial performance, but critics have argued that TWA is confounded by parasympathetic influence or that it is a non-specific feature of tachycardia. To help clarify the issue, we examined TWA as a function of parasympathetic activity, using cardiac vagal control as measured by high frequency components of heart period variability (respiratory sinus arrhythmia) and of interbeat intervals (IBI), across several stressful tasks. Sixteen male subjects were exposed to Valsalva, Serial Subtraction and Cold-Pressor tasks. After controlling for between-person variance, it was found that RSA did not contribute to TWA and that IBI contributed dependably to TWA only during the Valsalva maneuver, when heart rate was driven very high. In light of these results, we recommend that TWA continue to be considered a candidate indicator of sympathetic influence on myocardial performance, although caution should be used if heart rate is dramatically elevated.
The aim of this study was to evaluate the effects of chronic exposition to neurotoxic solvents in a group of laundry operators by means of Vocal Reaction Times (VRTs) measurements. A group of normal subjects, matched for age and educational level, constituted the controls. Vocal Reaction Times were measured by a device that presented to each subject a sequence of words on a computer screen, acquired the acoustic signal and measured VRTs and durations. During the test a random sequence of words was presented to the subjects; the protocol consisted of two immediate reading task and two delayed reading tasks. The test was performed using concrete and meaningless words. Statistical analysis showed that reaction times measured on the acoustic signals were longer for the exposed group than for the controls. The differences between durations were significant for the delayed reading tasks using concrete words and for all tasks using meaningless words. These findings suggest that this technique may be considered a useful tool for the assessment of the preclinical alterations of CNS in the monitoring of individuals chronically exposed to neurotoxic solvents.
The aim of this study was to evaluate the effects on a group of 35 laundry operators of exposure to the neurotoxic solvent perchloroethylene by means of Vocal Reaction Time (VRT) measurement. A group of 39 normal subjects comparable for age and educational level with the laundry workers constituted the controls. Vocal Reaction Times were measured by means of a device that presented Visual stimuli, acquired the acoustic signal and measured VRTs and durations. During each test a random sequence of words was presented to the subject under examination. The protocol consisted of an immediate reading task and two delayed reading tasks (the subject had to wait for. a response signal before starting to speak) in which the foreperiod was randomly selected (0.1 s or 1.5 s:). The test was performed using concrete and meaningless words. Analysis of the acoustic signals showed that reaction times were longer for the exposed group than for the controls. The differences between VRTs for the concrete words in all three tasks (immediate, 0.1 s and 1.5 s foreperiod) were statistically significant. The differences between durations were statistically significant for the delayed reading tasks using concrete words and for all tasks using meaningless words. Regression analysis showed a substantial correlation (r = 0.69, r = 0.73) between VRTs and an Exposure Index for concrete words in immediate and delayed (foreperiod = 1.5 s) reading tasks. This method can provide quantitative information about functional alterations of the nervous system areas related to speech production, in subjects exposed to neurotoxic solvents.
The aim of this study was to evaluate the effects of exposition to neurotoxic solvents in a group of laundry operators by means of Vocal Reaction Times (VRTs) measurements. A group of normal subjects, matched for age and educational level, constituted the controls. Vocal Reaction Times were measured by a device that presented to each subject a sequence of words on a computer screen, acquired the acoustic signal and measured VRTs and durations. During the test a random sequence of words was presented to the subjects; the protocol consisted of an immediate reading task and two delayed reading tasks. The test was performed using the concrete words /MARE/(sea) and /MURO/(wall) and the meaningless words /ABAVEK/ and /UBAVEK/.Statistical analysis of the acoustic signals showed that reaction times were longer for the exposed group than for the controls. The differences between durations were significant for the delayed reading tasks using concrete words and for all tasks using meaningless words. These findings suggest that the two sorts of words used may provide different information: VRTs with /MARE/ and /MURO/ seem to be more specific for evaluating motor planning processes, while duration data for /ABAVEK/ and /UBAVEK/ seem to be better for testing the muscle command preparation and execution stages.