ABSTRACT
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.
Subject(s)
Communication , Physician-Patient Relations , Surveys and Questionnaires , Female , Humans , Italy , Male , Middle AgedABSTRACT
EuroQol-5D (EQ-5D) is a well-known generic instrument measuring quality of life in different diseases; it includes 5 dimensions (mobility, self-care, daily activities, pain-discomfort, anxiety and depression) and a Visual Analogue Scale that evaluates patients' perceived health status. The aim of this study was to verify the utility of the EQ-5D in the Italian Cardiac Rehabilitation setting. The study population consisted of 248 consecutive cardiac rehabilitation inpatients (176 males and 72 females, aged 65.3 +/- 10.75 years), 200 of whom had recently undergone cardiac surgery (aortocoronary by-pass and/or valve replacement). Patients filled in the EQ-5D and A-D schedule (on anxiety and depression) on their second day in hospital. Exploratory and Confirmatory Factor Analysis confirmed the robust nature of the EQ-5D and its mono-factorial structure (EFA: Total Variance 50.39% - CFA: chi2 = 3.596; p approximately equal .60; RMSEA = 00; CFI = 1.00; RMR = .007). The instrument showed a good internal consistency (a .73) despite the limited number of items. T test and ANOVA showed the independence of the EQ-5D dimensions and VAS evaluation with respect to patients' education level, but an influence of age and sex. In general, females reported a lower quality of life than males, and older patients a lower quality of life than younger. Furthermore, cardiac-surgery patients reported more problems in self-care and pain-discomfort than ischemic/heart failure patients, and patients in NYHA Classes III and IV reported more difficulties in mobility than patients in lower NYHA classes. In 15% of patients, of heterogeneous socio-demographic and clinical characteristics, no problems in any of the 5 EQ-5D dimensions were reported: this group was characterised by scores under the clinical cut-off on anxiety and depression and showed a better quality of life on the VAS. Results confirm the robustness of the EuroQol-SD psychometric properties and the instrument's utility for the routine assessment of quality of life in the Italian Cardiac Rehabilitation setting.
