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PubMed1993

Quality retrieval of the empirical literature: a structured approach.

The extent and growth of medical knowledge is tremendous. As of December 1990, the MEDLINE database had 6.5 million records in its collection, with approximately a third added during the last five years. Despite numerous innovations, retrieval technology has not kept pace with the exploding numbers of authors, articles, journals, books and conferences. A major limiting factor is that the basic mechanisms of retrieval systems almost uniformly rely on keyword representation and searching. These keywords are either assigned to texts perhaps with the assistance of special vocabularies, or appear naturally in these texts. In particular no structural or role information is preserved to connect these keywords to each other. This paper presents an alternative approach wherein role preserving, structured representations are used. This approach has the potential to increase retrieval quality.

Information Storage and Retrieval↗
PubMed1992

Conceptual views on quality of life.

Quality of life can be discussed in many ways. One way is to analyse the empirical quantitative approach to determine whether the research categories are operational, empirically unambiguous, and thematically relevant; progress, in the sense of changing the number of research categories, does not take place through a systematic empirical test but through a modification of the theory of quality of life. The current debate on quality of life has included a conflict between natural science and a humanistic approach. Our view is that quality of life must be defined through the difficult concept of happiness. When cancer threatens happiness, not one but two fundamental crises influence quality of life, which we regard as a key concept of a therapeutic method.

Adaptation, Psychological↗
PubMed1997

Associations between different diagnostic approaches for child and adolescent psychopathology.

OBJECTIVE: To test the convergence between the empirical-quantitative approach of the Child Behavior Checklist (CBCL) and the clinical-diagnostic approach of the DSM. METHOD: The parent version of the NIMH Diagnostic Interview Schedule for Children (DISC), version 2.3, was administered after completion of the CBCL for 231 children and adolescents consecutively referred to an outpatient mental health clinic. RESULTS: Of the subjects with a DSM-III-R diagnosis, 60% scored in the clinical range of the CBCL total problem score. The Withdrawn scale predicted affective and anxiety disorders. The Somatic Complaints scale predicted anxiety and mood disorders and Attention Deficit Hyperactivity Disorder. The Anxious/Depressed scale predicted anxiety and mood disorders and, to a lesser extent, disruptive behavior disorders. The Social Problems scale predicted Oppositional Defiant Disorder. The Attention Problems scale was the only significant predictor of "pure" Attention Deficit Hyperactivity Disorder (ADHD). The Aggressive Behavior scale predicted several disruptive behavior disorders, and Major Depression. The Delinquent Behavior scale was strongly associated with Conduct Disorder. CONCLUSIONS: Empirically based CBCL scale scores and DISC-P based DSM-III-R diagnoses converged. However, both approaches do not converge to a degree that one approach can replace the other. Instead, combining both approaches may be valuable by adding information from one approach that is not captured by the other.

Adolescent↗
PubMed2003

Ethics of phase 1 oncology studies: reexamining the arguments and data.

Phase 1 oncology trials are critical to improving the treatment of cancer. Critics have raised 2 fundamental ethical challenges about phase 1 cancer research: the paucity of benefits with substantial risks and poor-quality informed consent. Despite 3 decades of controversy about phase 1 oncology research, there is little critical analysis of the arguments or of the data relevant to these questions. Existing but old data reveal that about 5% of patients in phase 1 trials experience shrinkage of their tumor, with a 0.5% mortality rate. In some notable cases, patients in phase 1 trials have been cured or sustained long-term remissions. Limited data suggest that patients in phase 1 trials may have better quality of life than comparable patients receiving supportive care. More important, the risks and benefits of phase 1 trials are not clearly worse than risk-benefit ratios used by the US Food and Drug Administration to approve chemotherapeutic agents for clinical use. The objections based on informed consent are deficiencies of disclosure, understanding, and voluntariness. The available data do not support the claim that disclosure is deficient. Although studies evaluating patient understanding have substantial methodological problems, they demonstrate that more than 70% of patients understand that they may not directly benefit even when they hope they will personally benefit. Finally, a closer look at issues of voluntariness reveals that patients with advanced cancer who participate in phase 1 research may have a different set of values than do critics and are not coerced. Overall, it appears that phase 1 oncology trials satisfy the requirement for a favorable risk-benefit ratio and that patients who enroll provide adequate informed consent.

Clinical Trials, Phase I as Topic↗
PubMed1991

A study of the foundations of ethical decision making of clinical medical ethicists.

A study of clinical medical ethicists was conducted to determine the various philosophical positions they hold with respect to ethical decision making in medicine and their various positions' relationship to the subjective-objective controversy in value theory. The study consisted of analyzing and interpreting data gathered from questionnaires from 52 clinical medical ethicists at 28 major health care centers in the United States. The study revealed that most clinical medical ethicists tend to be objectivists in value theory, i.e., believe that value judgments are knowledge claims capable of being true or false and therefore expressions of moral requirements and normative imperatives emanating from an external value structure or moral order in the world. In addition, the study revealed that most clinical medical ethicists are consistent in the philosophical foundations of their ethical decision making, i.e., in decision making regarding values they tend not to hold beliefs which are incompatible with other beliefs they hold about values.

Adult↗
PubMedDate not supplied

The uncertainty of certainty in clinical ethics.

Physicians accept fallibility in technical matters as a condition of medical practice. When it comes to moral considerations, physicians are often loathe to act without a good deal more certitude and seem less willing to accept error. This article argues that ethics is intrinsic to medical decision making, that error is the inevitable risk of any action and that inaction (clearly action by default) carries even greater risk of error. Whether in the moral or the technical sphere, error must be accepted by physicians as part of the learning process which informs and enriches future decisions. Moral virtue, it is concluded, resides more in the making of a decision and in the agony of making it than it does in the potentially fallible decision itself.

Decision Making↗
PubMed1991

Ethical decision making by family doctors in Canada, Britain and the United States.

Family doctors in Canada and the U.S. and general practitioners in England and Wales were sent a questionnaire containing six cases that raised moral issues. The doctors were asked to select the most appropriate course of action for each case as well as reasons for that decision. The ethical problems concerned how much information to divulge to patients, how extensively a physician should become involved in the lifestyles of patients, and how to deal with a possible family problem. The respondents selected different courses of action for the cases. More U.S. than Canadian or British physicians chose to divulge information, while more British than Canadian or U.S. physicians chose not to become involved in patients' lifestyles. Physicians who chose to divulge information were likely to be young, male, live in a small community, and have no academic affiliation. Physicians who chose not to become involved in lifestyle issues were likely to be young, church attenders, and in group practice in a small community.

Beneficence↗
PubMed2001

African Americans' views on research and the Tuskegee Syphilis Study.

The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.

Black or African American↗
PubMed2003

Public consultation in bioethics. What's the point of asking the public when they have neither scientific nor ethical expertise?

With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use.

Bioethical Issues↗
PubMed1999

Principles and problems in the assessment of quality of life in health care.

A remarkable surge in efforts to assess the quality of life of patients has occurred in recent years in medical research. Philosophical discussions of these developments have focused, on the one hand, on epistemological reservations about the plausibility of measuring quality of life and, on the other hand, on moral and ethical qualms about the meaning of life conveyed in such assessments. Whilst providing an important note of caution, such critiques fail to recognise two basic principles of quality of life in medical research. Firstly, it is intended to provide understanding about groups and categories of patients rather than individuals. Secondly the purpose of such research is to produce generalisations about the relative costs and benefits of specific health care interventions rather than absolute judgements regarding the quality of life of patients per se. Selecting a good quality of life measure for a clinical trial requires balancing criteria such as validity with practical feasibility. Such measures will play an increasingly central role in providing research evidence to improve health care.

Clinical Trials as Topic↗