Changes over 6-months in health-related quality of life in a matched sample of hispanics and non-hispanics with heart failure

Hispanics are a growing ethnic minority in the United States and one at significant risk for heart failure. Health-related quality of life (HRQL) is poor in individuals with heart failure, especially during and immediately following hospitalization. No prior research into the HRQL of Hispanics with heart failure was located. A sample of 80 individuals with heart failure, evenly divided by primary language and matched on functional status using the New York Heart Association classification system and age, was studied for 6 months following hospital discharge. Data on HRQL were collected using Spanish and English versions of the Minnesota Living with Heart Failure Questionnaire. Scores improved over time in both groups but significantly more so in the Hispanics when compared to the non-Hispanics. Group differences in HRQL could not be explained by demographics, clinical characteristics, treatment received, perceived support, or instrument response characteristics. Further exploration of this naturally occurring phenomenon may provide insight into how HRQL can be improved in the general heart failure population.     

Quality of life research in patients with rectal cancer: traditional approaches versus a problem-solving oriented perspective

The present paper critically appraises two recent overviews of the literature on rectal cancer and quality of life (QL). These reviews focus on the Anglo-American literature, largely neglect research from other countries, and provide little stimulus regarding future research directions. As an alternative perspective we propose the concept of problem-solving oriented QL research. The major theme is that the QL concept must be integrated into the clinical arena. To begin with, QL researchers must make themselves understandable. We outline several ways in which this can be achieved: (a) placing QL in a broader concept together with outcomes that are more familiar to clinicians; (b) depicting individual patients in the form of QL profiles; (c) clarifying the psychosocial/clinical correlates of particular QL scores of interest; and (d) conducting studies with a definitive practical goal in mind and integrating practitioners and patients into the study group. We illustrate the feasibility of such a research program by performance data from our Marburg-Biedenkopf field trial. Pursuing an ambitious research strategy that integrates experimental and applied research, the QL movement will have the chance to show that it is not merely l'art pour l'art, but indeed is beneficial to society. Received: 28 September 1998 / Accepted: 14 October 1998     

Intellectual property considerations in the development and use of HRQL measures for clinical trial research

As a result of the expanded use of health-related quality of life (HRQL) measures in clinical trial research, a variety of legal and ethical issues have surfaced. These issues can be put in the form of the following questlons: (1) Under what circumstances should access to HRQL measures be restricted? (2) Under what circumstances is it appropriate for the developers of HRQL measures to assert their intellectual property rights to the instruments? (3) Under what circumstances is personal profit from the sale and use of HRQL measures legally and socially appropriate? Access to HRQL research is to be encouraged since this is necessary for this field to progress. However, the need for protection against misuse of ongoing work is real and may justify the assertion of intellectual property rights. HRQL measures developed entirely with public monles should remain in the public domain or be managed for the public good. Instruments developed with private funds or with a mix of public and private funds should be treated in a manner that refiects a fair balance between the rights of the private developer and those of the scientific community and the public. HRQL questionnaires are regularly being refined; such work is costly. Investigators continuing research directly related to instrument refinement might reasonably ask for compensation from those who wish to use their work.     

Confidants' feedback and traumatic life events

One hundred six undergraduate (83 women and 23 men) completed surveys concerning their most traumatic life event, the feedback they received following their disclosure of the event to others, and how they felt after the disclosure. Results indicated that the better they felt after disclosure, the less disturbed they were by thoughts of the event at the time of the study. In addition, the more personal the trauma was, the worse they felt after their disclosure, and the more disturbed they were about the trauma. However, no significant relation existed between the positivity (e.g., supportiveness) of their confidant's feedback and their present degree of disturbance. Implications for understanding the complex relation between confiding traumatic events and resolving feelings surrounding those events were discussed.     

肾移植前后男性性生活状况比较

目的 :探讨肾移植前后男性性生活质量的变化。　方法 :将 86例男性肾移植病人分为低年龄组 (2 5～ 35岁 ,35例 )、中年龄组 (36～ 45岁 ,2 9例 )、高年龄组 (46～ 5 5岁 ,2 2例 ) 3组 ,分别调查病人患病前后、肾移植术后性生活能力、频率、性生活满意程度等性生活状况。　结果 :86例病人患病前均有性生活能力 ,患病后有性生活能力的 :低年龄组、中年龄组、高年龄组分别为 2 8.6 %,13.8和 9.1%。肾移植术后有性生活能力的 :低年龄组、中年龄组、高年龄组分别为 88.6 %、75 .9%和 6 3.6 %。　结论 :肾移植术后的性生活质量明显好于患病后 ,年龄越轻、恢复的越理想。     

ROMEO: rethink organization to improve education and outcomes.

AIMS: Scarcity of resources, expertise and evidence-based models have so far limited delivery of patient-centred diabetes education. We have developed and validated a group care approach that is applicable to everyday clinical practice and cost-effective in improving metabolic control, knowledge of diabetes, health behaviours, and quality of life in Type 2 diabetes. A clinical trial (ROMEO) was planned to evaluate applicability and reproducibility of group care in other outpatients facilities and assess its impact on a larger patient population. METHODS: Multicentre, randomized, controlled clinical trial of group vs. individual care in the routine management of Type 2 diabetes. Nine hundred patient aged < 80, with diabetes of > or =1 year known duration, treated by either diet alone or diet and oral agents, will be recruited in 15 centres and followed for 4 years. Training of physicians, nurses and dietitians included preparation of operating manual and videos, interactive sessions, and evaluation of local facilities and resources. RESULTS: Primary measurements: 3-monthly HbA1c, fasting blood glucose, body weight, waist-hip ratio, yearly blood lipids, and bi-yearly assessment of knowledge of diabetes, health behaviours and quality of life. Secondary outcomes: systolic and diastolic blood pressure, evaluation of ECG for ischaemia and QT interval, hypoglycaemic and anti-hypertensive medication and cardiovascular events. Analysis will be by intention-to-treat. DISCUSSION: If ROMEO confirms that group care can be successfully implemented in different clinics, a novel clinico-pedagogic tool will have been acquired to support patient-centred education, improve lifestyle and outcomes, support team work, enhance providers' attitudes and competencies and ameliorate diabetes care organization.     

Burden of injuries and diseases in Yunnan Tin Miners

The burden of injuries is underestimated to an even greater extent in developing countries than in industrialized countries. The objective of this paper is to analyze injuries and diseases in the monitored work place of the world's largest tin mining operation in Yunnan, South China.     

Screening for Prostate, Breast and Colorectal Cancer in Renal Transplant Recipients

American Society of Transplantation guidelines recommend screening renal transplant recipients for breast, colorectal and prostate cancer. However there is a lack of evidence to support this practice. Computer simulation modeling was used to estimate the years of life lost as a result of these cancers in 50-year-old renal transplant recipients and subjects in the general population. Renal transplant recipients lost fewer years of life to cancer than people in the general population largely because of reduced life expectancy. In nondiabetic transplant recipients, loss of life as a result of these cancers was comparable with that in the general population only under assumptions of increased cancer incidence and cancer-specific mortality risks. Even with two-fold higher cancer incidence and disease-specific mortality risks, diabetic transplant recipients lost considerably fewer life years to cancer than those in the general population. Recommended cancer screening for the general population may not yield the expected benefits in the average renal transplant recipient but the benefits will be considerably higher than for patients on dialysis. Transplanted patients at above-average cancer risk in good health may achieve the benefits of screening that are seen in the general population.     

Predictors of Maternal Responsiveness

PURPOSE: To explore maternal responsiveness in the first 2 to 4 months after delivery and to evaluate potential predictors of maternal responsiveness, including infant feeding, maternal characteristics, and demographic factors such as age, socioeconomic status, and educational level. DESIGN AND METHODS: A cross-sectional survey design was used to assess the variables of maternal responsiveness, feeding patterns, and maternal characteristics in a convenience sample of 177 mothers in the first 2 to 4 months after delivery. The 60-item self-report instrument included scales to measure maternal responsiveness, self-esteem, and satisfaction with life as well as infant feeding questions and sociodemographic items. An online data-collection strategy was used, resulting in participants from 41 U.S. states. FINDINGS: Multiple regression analysis showed that satisfaction with life, self-esteem, and number of children, but not breastfeeding, explained a significant portion of the variance in self-reported maternal responsiveness scores. In this analysis, sociodemographic variables such as age, education, income, and work status showed little or no relationship to maternal responsiveness scores. CONCLUSIONS: This study provides additional information about patterns of maternal behavior in the transition to motherhood and some of the variables that influence that transition. Satisfaction with life was a new predictor of maternal responsiveness. However, with only 15% of the variance explained by the predictors in this study, a large portion of the variance in maternal responsiveness remains unexplained. Further research in this area is needed.