Ⅱ型糖尿病人生命质量测量初始量表研制中的问题及对策

糖尿病人生命质量评价量表的研制，应抓住影响糖尿病人生活质量的主要矛盾。此初始量表包括患者的一般情况、躯体健康、社会适应、功能状态、心理卫生评价等内容，其条目权重系数是按照糖尿病对患者健康和生活质量的影响程度确定的。研制量表过程中，应坚持系统论、主观评价和客观评价相统一、从社会深层面上体现生命质量的本质以及坚持对量表的效度、信度和反应度进行科学地评价。     

Motivations for physician-assisted suicide

OBJECTIVE: To obtain detailed narrative accounts of patients' motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants' homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient's request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients' concerns over time, and tailoring care accordingly.     

Screening and Identifying Children with Autism Spectrum Disorders in the Public School System: The Development of a Model Process

Heightened public awareness of autism and increased prevalence estimates of autism spectrum disorders (ASDs) has generated a sense of urgency within the public school system to identify children with these disorders for targeted intervention. Two multidisciplinary groups of professionals, one each from two separate school districts, were identified and trained to provide diagnostic and consultative services. This paper outlines a model process for school personnel to develop a basic level of training and competence in recognizing and serving students who have an ASD by (1) providing an overview of the legal and clinical issues involved in screening for children with ASD within the school system, (2) defining a school-based professional training process and (3) outlining a school-based ASD screening process.     

Sexuality in the nursing home,part 2: Managing abnormal behavior-legal and ethical issues

Everyone, regardless of age, needs love, touch, companionship, and intimacy. The 1.6 million elderly in the 20,000 U.S. nursing homes are not an exception. The literature indicates that nursing home residents continue to have an interest in sexual activity regardless of age. Sexuality, however, is frequently overlooked by physicians and staff working with nursing home residents. Many staff members have only a vague understanding of the sexual needs of the elderly. This results in a perception of residents' sexual interests as behavioral problems rather than expressions of need for love and intimacy. Inappropriate sexual behaviors in the nursing home can create an intense burden for nursing home staff. This article discusses ways to dealing with inappropriate sexual behaviors in long-term care settings and the ethical issues involved.     

Regulation, religious experience, and epilepsy: a lens on complementary therapies

Complementary and alternative medical (CAM) therapies include chiropractic, acupuncture and traditional Oriental medicine, massage therapy, and herbal remedies; mind-body therapies (such as meditative practices and visualization); and folk practices and religious healing. Of these, modalities based on spiritual healing create a number of conundrums for the clinician, including legal, regulatory, and ethical issues. Further, the historic relationship between the study of epilepsy and religious experience suggests particular, potential associations between CAM therapies (and especially spiritual healing) and care for epileptic patients. There are at least two dimensions to this exploration: first, the widespread use of spiritual healing for treatment of epilepsy; and second, the hypothesized connection between epileptic seizures and mystical states. A number of legal rules help address potential abuse of authority by health care professionals, and include: (1) medical licensure; (2) scope of practice; (3) professional discipline; (4) malpractice; and (5) fraud. This article offers a preliminary resource for clinicians interested in these topics.     

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。