Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Reliability, validity and responsiveness of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score--Physical Function Short-form (KOOS-PS).

OBJECTIVE: To test the reliability, validity and responsiveness of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score--Physical Function Short-form (KOOS-PS). METHODS: The Portuguese full KOOS and Medical Outcomes Study e 36 item Short-Form (SF-36) questionnaires, and a form of individual characteristics of the patients were applied to 85 subjects with knee osteoarthritis (OA). RESULTS: Cronbach's alpha coefficient was 0.89 and intraclass correlation coefficient (ICC) was 0.85, certifying that KOOS-PS reliability was acceptable. Construct validity was supported by the confirmation of the five predefined hypotheses involving expected correlations between KOOS-PS scale, KOOS subscales and SF-36 subscales. An additional predefined hypothesis was also confirmed with the subjects that need walking aids obtaining higher KOOS-PS scale scores (P = 0.011). Responsiveness to 4 weeks of conventional physical therapy treatments and to a 6-week health education and exercise program was demonstrated with a standardized effect size of 0.88 and 0.50, and a standardized response mean of 1.21 and 0.73, respectively. CONCLUSION: The Portuguese KOOS-PS evidenced acceptable psychometric characteristics.

Cross-cultural adaptation and validation of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score (KOOS).

OBJECTIVE: The objective of this study was to translate and culturally adapt the Knee injury and Osteoarthritis Outcome Score (KOOS) to the Portuguese language and to test its reliability, validity, floor/ceiling effects and responsiveness. METHODS: This new version was obtained with forward/backward translations, consensus panels and a pre-test. The Portuguese KOOS and Medical Outcomes Study - 36 item Short Form (SF-36) questionnaires, visual analogue scales (VAS) of pain, disability and discomfort, and a form for the characteristics of the patients were applied to 223 subjects with knee osteoarthritis (OA). RESULTS: Reliability was acceptable with Cronbach's alpha coefficients between 0.77 and 0.95, and intraclass correlation coefficients (ICC) ranging from 0.82 to 0.94 for the KOOS subscales. Construct validity was supported by the confirmation of six of the seven predefined hypotheses involving expected correlations between KOOS subscales, SF-36 subscales and VAS. An additional predefined hypothesis was also confirmed with the subjects that need walking aids obtaining lower scores in all five KOOS subscales (P< or =0.001). Floor/ceiling effects were considered to be not present, except for the subscale function in sport and recreation (33.6% of the subjects reported worst possible score). Responsiveness to 4 weeks of physical therapy was demonstrated with standardized effect size between 0.78 and 1.08, and standardized response mean ranging from 0.83 to 1.37 for the KOOS subscales. CONCLUSION: The Portuguese KOOS evidenced acceptable psychometric characteristics.

A first step in total quality management of nursing facility care: development of an empirical causal model of structure, process and outcome dimensions.

While the structure, process, and outcome taxonomy has long been used in the field of health care quality measurement and evaluation, it has not been used in a true causal model which assesses facility level quality. Total quality management and continuous quality improvement call for routinely assessing facility and resident level quality in a causal framework. This paper presents a causal modeling methodology as a more appropriate method for assessing and understanding the inter-relatedness among each of the quality dimensions of Nursing Facility care, and presents how such a causal model directly relates to the notion of continuous quality improvement. The methodology consists of five steps: (1) sample definition and data collection, (2) data reduction through factor analysis, (3) development and testing of a causal model through path analysis, (4) identification of patterns of care through cluster analysis, and (5) integration of the model to both continuous quality improvement and to complex relationships involving quality and organizational variables. The methodology is fully illustrated by using a sample of 104 nursing facilities in Wisconsin in which quality dimensions have been captured through the Quality Assessment Index. The analysis demonstrates that nursing facilities may be substantially benefited by having access to causal linkages which materially affect outcome quality. Management would then have first-hand knowledge of the structural characteristics and the process activities that they may pursue in order to improve outcome quality.

Quality of life in patients undergoing coronary revascularization.

INTRODUCTION: This study was aimed at the evaluation of the impact of coronary revascularization surgery on the quality of life (QOL) and identification of some variables which may contribute to influence the patients' own perception of their health condition. METHODOLOGY: We prospectively studied 150 consecutive patients subjected to isolated coronary bypass surgery during a 3-month period, with evaluation of their perception of QOL before surgery and 6 months thereafter. The measurement instruments used were the MOS Health Survey (SF-36) and the Nottingham Health Profile (NHP). Additionally, a questionnaire for identification of lifestyles was introduced. RESULTS: The majority of the patients were male (94%), above 50 years of age (81%), with a low educational level (65%), married (90%) and pensioners (44%). About one third (38%) had marked physical limitations (CCS class III/IV), with comorbidity (80%), previous myocardial infarction (49%) and 3-vessel coronary disease (68%). There was no operative mortality, but 29% had postoperative complications, albeit minor in the majority. Admission time was less than 8 days in 88.6% of the cases. Surgery proved beneficial in improving QOL, with better perception after surgery in all dimensions of both measurement instruments (p < 0.001). A higher level of education was related to a better perception of the energy dimension, married patients had a better improvement in the dimensions of physical pain and social isolation. More severe preoperative angina determined less favourable scores in the dimensions of mental health, social function and vitality; comorbidity had a negative impact on vitality and physical mobility; and the number of risk factors and postoperative complications had a negative impact on the dimensions of energy and emotional reactions, and social isolation and physical function, respectively. Six months after surgery, 62% of the patients who were still working before surgery had resumed their professional activity, but about 20% had retired; the majority had adopted healthier lifestyles with a decrease in tobacco and alcohol consumption and a more balanced diet. CONCLUSIONS: Coronary revascularization substantially improves QOL, with a significant impact on the clinical variables of the psycho-social dimensions.

[Development of the Portuguese version of MOS SF-36. Part II --Validation tests]. / Criação da versão Portuguesa do MOS SF-36. Parte II--Testes de validação.

This paper describes the study aimed at validating the Portuguese version of the MOS SF-36 instrument of assessment. It starts by presenting the results of the implementation of this instrument in a sample of 930 pregnant women and the results of scaling tests, including the values of internal consistency and reliability. However, since a reliable instrument is not necessarily a valid one, the results of several validity tests are also presented. Finally, this paper ends by recommending the use of the Portuguese version of the SF-36 instrument of assessment.

[Development of the Portuguese version of MOS SF-36. Part I. Cultural and linguistic adaptation]. / Criação da versão portuguesa do MOS SF-36. Parte I--Adaptação cultural e linguística.

No one aims at applying generic measures as substitutes for other more traditional clinical procedures. The whole history of the evolution of these types of measures has been based on comparisons with clinical measures, always seen by researchers as ways to validate health outcome measures and as a process to be recognized by clinicians as a way to detect changes in time not always detected by the usual measures. The measurement instrument presented in this paper is the Portuguese version of the MOS SF-36, originally a result of the Medical Outcomes Study, a study carried out by Rand Corporation researchers in the 80's. One of the objectives of these researchers was precisely to develop instruments to be used in continuous monitoring of outcomes. This paper describes the first time MOS SF-36 was culturally adapted to Portuguese, validated and implemented. The first part mentions some of the foundations and developments of the original instrument as well as some results obtained from some specific applications. The second part introduces operational definitions for each of the eight scales and describes the SF-36 measurement model as well as the factor structure with two dimensions. Next, we present the design used by us to transform the data from the time they are collected from the respondents to the time they are ready to be further used. Finally, the methodology used to culturally adapt the MOS SF-36 and create a Portuguese version which is culturally equivalent are presented.

Portuguese version of the bath indexes for ankylosing spondylitis patients: a cross-cultural adaptation and validation.

The Bath Ankylosing Spondylitis Activity Index (BASDAI), Functional Index (BASFI), Metrology Index (BASMI), and Global Score (BASG) are commonly used to assess patients with ankylosing spondylitis (AS). The aim of this study was to cross-culturally adapt and validate these indexes into the Portuguese language. Seventy-eight patients were included in the study. After forward and backward translations, the questionnaires were administered and tested for internal consistency, test-retest reliability, face validity, content validity, and construct validity. The outcome measures HAQ, EQ-5D, and SF-36 were also implemented. Metrological parameters (BASMI components) and chest expansion were evaluated. Correlation coefficients for test-retest were 0.875, 0.937, 0.831, and 0.961 for BASDAI, BASFI, BASMI, and BASG, respectively. Internal consistency coefficients were between 0.747 and 0.953. The adapted and translated questionnaires demonstrated an acceptable comprehensibility by a panel of patients, and face validity was assured by the cognitive debriefing performed. Content validity was assured by comparing the scores obtained by the questionnaires when age and gender, age of symptoms onset, and disease duration were considered. Construct validity was assured by significant correlations established between the Bath scores and generic health status HAQ, EQ-5D and SF-36, morning stiffness duration, chest expansion, and physician disease activity assessment. The Portuguese version of the BASDAI, BASFI, BASG, and BASMI showed adequate reliability and validity in patients with AS. The measurement properties were comparable to versions in other languages, indicating that the indexes can be used for evaluation of Portuguese-speaking AS patients.

Do patients' health status reports predict future hospital stays for patients with an acute myocardial infarction?

OBJECTIVE: Although patients' reports of health status and functioning have been shown to be reliable and valid measures for use in health care research, there is limited information on their practical utility in clinical settings. The purpose of this study was to determine if patients' reports of physical and psychosocial health status have prognostic value by predicting future hospital stays in acute myocardial infarction (AMI) patients. METHODS: Research design was an observational, longitudinal follow-up study involving a sample of 132 AMI patients recently discharged from nine community hospitals. One hundred twelve patients (85%) completed the study. Patient reports of general health status, diagnosis-specific measures of health status, medical history, and demographic characteristics were collected one to two months post AMI; follow-up data were gathered six months later to identify occurrence of new cardiac-related stays. RESULTS: Poor psychosocial functioning and cardiac symptoms were significantly associated with the likelihood of being rehospitalized (odds ratios of 4.62 and 4.00). Multivariate results, however, show that poor psychosocial function and younger age--but not cardiac symptoms--are significant independent predictors of new hospital stays, after controlling for medical history and demographic variables. CONCLUSION: Simple patient reports of health status, which physicians can obtain easily from AMI patients shortly after an infarction, are predictive of rehospitalization.

The patient comment card: a system to gather customer feedback.

Continuous patient feedback can give important information to hospitals about the quality of care they provide. The Patient Comment Card (PCC), a brief form that can be used to gather open-ended comments from patients and to measure quality, was developed during a two-year period and was extensively evaluated in a series of three pilot tests involving more than 2,000 patients discharged from five hospitals. Evaluation results demonstrate that the questionnaire elicits useful comments from patients and can generate statistically reliable scores and valid quality measures. However, in a field trial in four hospitals, low response rates (15%-27%) reflected, first, lack of follow-up of non-respondents, and second, the fact that most of the PCC quality scores were upwardly biased; these inflated scores were likely to reflect the low response rate. Tools such as the PCC should be used judiciously, given the possible abuses and misinterpretations of hospital quality scores.