Patients' rights, quality of life, and health care system performance

The purpose of this paper is to promote the development of a social contract between patient and clinician that permits patients to state how they want to live as they survive rather than what they are willing to lose to extend their survival. To do this, patients must have sufficient leverage to affect the nature of the care they receive. This leverage, it is proposed, can be achieved by first making a Declaration of Patients Rights Relative to Their Quality of Life' and then evaluating the extent to which the patient's providers comply with this rights statement. The paper also reviews The World Health Report 2000 [Health Systems: Improving Performance Geneva: WHO, 2000] as an example of an alternative approach to defining a health care social contract and evaluating a health system's performance. Also discussed, were steps that could be taken to facilitate the integration of the patients' rights statement into medical practice and health care systems performance.     

Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home

The present paper provides an overview of the application of the key ethical issues which arose in an EU-funded research, technology and development project, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). The primary aim of the ACTION project was to support frail older people and their family carers in their own homes across England, Northern Ireland, the Republic of Ireland, Sweden and Portugal via the use of user-friendly information and communication technology. Ethical guidelines were developed in the project and used as a tool to enable the multidisciplinary project team to increase their awareness of ethical issues in their everyday work, and to act as a useful ethical framework for regular team discussions at international and local meetings across the partner countries. A range of ethical issues arose during the field-study phases of the project when the ACTION services were introduced into a number of families' own homes. It can be argued that these ethical issues reflect factors relating both to the application of research into practice, as well as those relating more directly to the use of new technology by families and care professionals. Key issues centre upon the ethical concepts of autonomy, independence, quality of life, beneficence, non-maleficence and justice, and more specifically, on ethical issues of security, privacy and confidentiality, increased expectations, and withdrawal of the service. This paper is intended to facilitate dialogue and debate in the area of enabling (assistive) technology in home care for older people and their families.     

Hospital and community-based care for patients with chronic schizophrenia in Hong Kong

Background: There have been few studies on the impact of de-institutionalization on psychiatric patients' lives in Chinese culture. The objectives of the present study were: (1) to compare quality of life (QOL) of Chinese patients with schizophrenia living in three different treatment settings (hospital, long-stay care home and half-way house) in Hong Kong, and (2) to identify factors associated with patients' subjective well-being. Method: A matched-group design was used. Subjects (n = 204) living in the three treatment settings were matched according to age, sex, educational level, marital status, length of psychiatric illness and number of previous psychiatric admissions. Multiple measures for the evaluation of QOL included the Satisfaction With Life Scale (SWLS), WHO Quality of Life Measure-Abbreviated version-Hong Kong (WHOQOL-BREF-HK), Life Event List (LEL) and the Global Assessment Scale (GAS). Psychiatric symptoms were evaluated with the Brief Psychiatric Rating Scale (BPRS). Results: Significant differences in objective QOL indices (global level of functioning, number of life events and income) between subjects staying in hospital and community-based residential services were found in favour of the less restrictive community settings. However, with respect to global life satisfaction, subjects preferred the more secure settings despite their restrictiveness. Predictors of subjective well-being were educational level, negative life events and the BPRS items of somatic concern, anxiety and guilt feelings. The impact of negative life events on subjective well-being decreased over time. Conclusion: In a cohort of Chinese patients with chronic schizophrenia, community-based treatment settings had a positive impact on objective QOL indices but not on subjective well-being. Negative life events, education level, and the BPRS items of somatic concern, anxiety and guilt feelings were predictors of subjective well-being which seemed to adapt to external circumstances over time. Accepted: 1 October 2002 Correspondence to Dr. G. S. Ungvari     

AIDS policy modeling for the 21st century: an overview of key issues

Decisions about HIV prevention and treatment programs are based on factors such as program costs and health benefits, social and ethical issues, and political considerations. AIDS policy models – that is, models that evaluate the monetary and non-monetary consequences of decisions about HIV/AIDS interventions – can play a role in helping policy makers make better decisions. This paper provides an overview of the key issues related to developing useful AIDS policy models. We highlight issues of importance for researchers in the field of AIDS policy modeling as well as for policy makers. These include geographic area, setting, target groups, interventions, affordability and effectiveness of interventions, type and time horizon of policy model, and type of economic analysis. This paper is not intended to be an exhaustive review of the AIDS policy modeling literature, although many papers from the literature are discussed as examples; rather, we aim to convey the composition, achievements, and challenges of AIDS policy modeling.     

二十一世纪初中国的主要健康问题浅析

进入21世纪,人民群众所期待的卫生服务水准和追求的健康目标,正随着经济状况的改善而不断提高,社会主义市场经济制度要求构建与之相适应的卫生体系与运行机制。总体来说,目前中国卫生事业的发展滞后于经济发展,卫生改革滞后于社会主义市场经济发展进程所带来的相关体制变化。当前面临的主要卫生问题包括:多数人口缺乏基本的健康保障;医疗费用上涨超过居民收入增长和承受能力;政府卫生投入显著不足,卫生资源投入不公平、服务分配不公平及由此带来的健康不公平现象日益突出;因病致贫现象仍较严重,构成了社会不稳定不和谐因素;中国既面临仍在蔓延的传染病和地方病,又面临伴随城市化和人口老龄化的慢性非传染性疾病快速上升的双重负担,而政府和卫生系统尚缺乏足够的应对能力。这些问题同国家经济发展和社会进步息息相关,如果得不到妥善解决,将对构建和谐社会、保证社会公平稳定、巩固经济发展成果及促进人的全面发展造成严重的负面影响。     

A randomized validation study comparing embedded versus extracted FACT Head and Neck Symptom Index scores

Objective To evaluate the impact of administration context (embedded versus stand-alone) on the reliability and validity of the FACT Head and Neck Symptom Index (FHNSI). Methods Ninety-eight patients with head and neck cancer were randomized to one of two assessment conditions to evaluate the FHNSI’s context (items administered embedded within the FACT-H&N or as stand-alone scale) and order of administration in the battery. Results Planned comparisons on the item and scale levels revealed no systematic order or context differences. The embedded and stand-alone versions of the FHNSI showed high internal consistency (Cronbach's alpha 0.79–0.87). Correlations were high between the FHNSI versions and the physical and functional well-being scales of the FACT-H&N (0.70–0.84) and measures of pain intensity (−0.73, −0.74) and depression (−0.71, −0.74); moderate to large with the Performance Status Scale for Head and Neck subscales (PSS-HN; 0.46–0.71); and low with an anxiety measure (0.30, 0.34). Both FHNSI versions differentiated patients grouped by performance status (p < .0001, p < .0001) and global rating of change (p < .0001, p < 0.01). The FHNSI's minimally important difference range was 3–4 points. Conclusion The FHNSI is a reliable and valid symptom index, which can be administered alone or scored using items embedded within the FACT-H&N. Athanassios Argiris—Formerly of Feinberg School of Medicine, Northwestern University, Chicago, IL.     

The Practice of Structure Activity Relationships (SAR) in Toxicology

Both qualitative and quantitative modeling methods relatingchemical structure to biological activity, called structure-activityrelationship analyses or SAR, are applied to the predictionand characterization of chemical toxicity. This minireview willdiscuss some generic issues and modeling approaches that aretailored to problems in toxicology. Different approaches to,and some facets and limitations of the practice and scienceof, SAR as they pertain to current toxicology analyses, andthe basic elements of SAR and SAR-model development and predictionsystems are discussed. Other topics include application of 3-DSAR to understanding of the propensity of chemicals to causeendocrine disruption, and the use of models to analyze biologicalactivity of metal ions in toxicology. An example of integrationof knowledge pertaining to mechanisms into an expert systemfor prediction of skin sensitization to chemicals is also discussed.This minireview will consider the utility of modeling approachesas one component for better integration of physicochemical andbiological properties into risk assessment, and also considerthe potential for both environmental and human health effectsof chemicals and their interactions.     

Identifying the Family,Job, and Workplace Characteristics of Employees Who Use Work‐Family Benefits*

A contextual effects perspective is used to identify family, job, and workplace characteristics associated with the use of work‐family benefits by 527 employees in 83 businesses. Parents of dependent children are no more likely than other employees to use benefits but particular family problems predict female employee use of paid leave and mental health benefits. Workplace size, sector, and culture are better predictors of employee use than are employee job characteristics.