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PubMed1999

Programmes in chronically vulnerable areas: challenges and lessons learned.

In the 'chronically vulnerable areas' (CVAs) of East Africa a smooth linear transition away from emergency programming towards rehabilitation and long-term development is difficult, if not impossible. This makes uncritical application of the 'relief-to-development' continuum to programming unhelpful at best, and perhaps counter-productive. This paper is the result of CARE's efforts to review its own programmes--and those of some of its sister agencies--in chronically vulnerable areas in the East Africa region, to derive important lessons learned and to identify areas where improvements are needed. The paper focuses on strategic considerations and decision-making in relation to entry, programme design and strategies for transition and exit.

Africa, Eastern↗

PubMedDate not supplied

Decision making regarding multifetal reduction.

OBJECTIVE: To identify salient variables that influence decision making regarding multifetal reduction (MFR) and describe their effect on individuals over time. DESIGN: Prospective, exploratory, descriptive design, using qualitative and quantitative methods. SETTING: Midwestern tertiary care center. PARTICIPANTS: A convenience sample of 11 consecutive consenting couples with triplet or higher-order pregnancies who elected to undergo MFR. METHODS: Semistructured audiotaped telephone interviews at three points: (a) 2 weeks postreduction, (b) 6 weeks postpartum, and (c) 6 months postpartum; a demographic and marital adjustment questionnaire. MAIN OUTCOME MEASURES: Themes identified by content analysis and compared via matrix analysis between males and females and at three points in time; trends in marital adjustment. RESULTS: Dominant variables influencing MFR decision making were risks associated with higher-order pregnancies and preservation of infants' and mothers' health. Most participants identified emotional issues, including moral and ethical dilemmas, as the most difficult aspect of reduction. Over time, participants reported feeling more positive about their decision; nonetheless, negative feelings emerged progressively. CONCLUSIONS: Risk aversion favored MFR decision making. Yet, both making and living with the decision were emotionally difficult for this sample. Interventions are needed to assist couples with this decision and its consequences.

Adult↗

PubMed2006

"I really should've gone to the doctor": older adults and family caregivers describe their experiences with community-acquired pneumonia.

BACKGROUND: Responding to acute illness symptoms can often be challenging for older adults. The primary objective of this study was to describe how community-dwelling older adults and their family members responded to symptoms of community-acquired pneumonia (CAP). METHODS: A qualitative study that used face-to-face semi-structured interviews to collect data from a purposeful sample of seniors aged 60+ and their family members living in a mid-sized Canadian city. Data analysis began with descriptive and interpretive coding, then advanced as the research team repeatedly compared emerging thematic categories to the raw data. Searches for disconfirming evidence and member checking through focus groups provided additional data and helped ensure rigour. RESULTS: Community-acquired pneumonia symptoms varied greatly among older adults, making decisions to seek care difficult for them and their family members. Both groups took varying amounts of time as they attempted to sort out what was wrong and then determine how best to respond. Even after they concluded something was wrong, older adults with confirmed pneumonia continued to wait for days, to over a week, before seeking medical care. Participants provided diverse reasons for this delay, including fear, social obligations (work, family, leisure), and accessibility barriers (time, place, systemic). Several older adults and family members regretted their delays in seeking help. CONCLUSION: Treatment-seeking delay is a variable, multi-phased decision-making process that incorporates symptom assessment plus psychosocial and situational factors. Public health and health care professionals need to educate older adults about the potential causes and consequences of unnecessary waits. Such efforts may reduce the severity of community-acquired pneumonia upon presentation at clinics and hospitals, and that, in turn, could potentially improve health outcomes.

Aged↗

PubMed1989

Life-sustaining treatment for patients with AIDS.

Physicians increasingly are being called upon to make difficult decisions about intensive care for patients with the acquired immunodeficiency syndrome (AIDS). AIDS patients who require intensive care have a poor prognosis; the in-hospital mortality rate of those receiving mechanical ventilation for P carinii pneumonia is 86-100 percent in most studies. However, in the past year, two studies documenting improved outcome have been published. Physicians should understand these outcome data and use well-established ethical principles to allow informed competent patients with AIDS to express their preferences regarding intensive care. Patients should be encouraged to provide advanced directives regarding life-sustaining treatments or to designate surrogate decision-makers to be consulted should they lose mental competence. The health care system should provide alternatives to the ICU for compassionate terminal care. However, arbitrary policies denying intensive care to AIDS patients for whom it is medically indicated and desired are not warranted.

Acquired Immunodeficiency Syndrome↗

PubMedDate not supplied

Computerizing guidelines to improve care and patient outcomes: the example of heart failure.

Increasing amounts of medical knowledge, clinical data, and patient expectations have created a fertile environment for developing and using clinical practice guidelines. Electronic medical records have provided an opportunity to invoke guidelines during the everyday practice of clinical medicine to improve health care quality and control costs. In this paper, efforts to incorporate complex guidelines [those for heart failure from the Agency for Health Care Policy and Research (AHCPR)] into a network of physicians' interactive microcomputer workstations are reported. The task proved difficult because the guidelines often lack explicit definitions (e.g., for symptom severity and adverse events) that are necessary to navigate the AHCPR algorithm. They also focus more on errors of omission (not doing the right thing) than on errors of commission (doing the wrong thing) and do not account for comorbid conditions, concurrent drug therapy, or the timing of most interventions and follow-up. As they stand, the heart failure guidelines give good general guidance to individual practitioners, but cannot be used to assess quality or care without extensive "translation" into the local environment. Specific recommendations are made so that future guidelines will prove useful to a wide range of prospective users.

Algorithms↗

PubMed1989

Measuring patient preferences for health outcomes: a decision analytic approach.

Decision analysis is a quantitative method used to assist difficult decisions. Its goal is to add insights when decision makers are faced with uncertainty. Decision analysis entails estimating the likelihood of clinical events, and, in addition, placing values on those events that are considered outcomes of interest. Placing values on clinical outcomes is called utility analysis. This paper introduces the utility analytic techniques used to quantify the worth of health outcomes for patients.

Decision Making↗

PubMedDate not supplied

The prevalence of cancer: a review of the available data.

AIMS AND BACKGROUND: Cancer prevalence in a population, defined as the proportion - or the number - of people who were diagnosed with a cancer during their lives and are still alive at a given date, is a crucial indicator for heath care planning and resource allocation. Long-term population-based cancer registries (CR) are the appropriate tools to produce prevalence figures, which, however, are scarcely available. This paper contains a review up to 1999 of the published data world-wide (reports and articles) on cancer prevalence: including measured and estimated figures. MATERIALS AND METHODS: Data on cancer prevalence from CRs are available for the Nordic countries, Connecticut, and Italy. In addition, electronic data are available for the European Union (EU). Data for the Nordic countries were first published in the mid-seventies, reporting the prevalence for 1970. The first data from Connecticut were available 10 years later. Estimates for all EU countries were published by the International Agency for Research on Cancer (IARC) in 1997. In Italy, observed and estimated data on the prevalence of respiratory and digestive tract cancer and breast cancer have been published during the nineties, followed by a systematic analysis for all cancers in 1999. By using information obtained from CRs, cancer prevalence data were calculated directly (observed prevalence) by means of incidence and follow-up information on individual cancer patients, or indirectly (estimated prevalence) by means of mathematical models, which generally use epidemiological information at the aggregate level. RESULTS: Cancer prevalence for all cancers combined (proportions per 100,000 inhabitants) showed values of less than 700 in males and less than 800 in females in 1970 (Finland) to over 2,300 in males and over 3,000 in females in 1992 (Italian registries). With few exceptions, in each country and period considered the cancer sites contributing most to cancer prevalence are lung, colon-rectum, prostate and bladder in males, colon-rectum, breast, uterus (both cervix and corpus) and ovary in females. At present, comparison of measurements from different areas is difficult because there exists no standardized mode of presentation. CONCLUSIONS: In spite of their being potentially useful for health care planning, prevalence data have been produced inconsistently and late by cancer registries, at least in comparison with the systematic availability of incidence and survival statistics. The available data can be compared only to a limited extent due to differences in completeness, in the choice of indicators, in the standard populations, and in the frequency of publication. It would be desirable that in the future data will be produced systematically, with a higher level of standardization compared to the past, and, most importantly, on the same geographic and administrative scale as health-care decision-making.

Europe↗

PubMed2004

An algorithmic computerised order entry approach to assist in the prescribing of new therapeutic agents: case study of activated protein C at an academic medical centre.

BACKGROUND: Academic medical centres face the need to care for patients with complex medical conditions, educate physicians-in-training and conduct research, all with increasingly constrained budgets. The adoption of new therapeutic technology presents challenges and opportunities in each of these areas. Severe sepsis remains a major cause of morbidity and mortality, especially in tertiary-care facilities. Recombinant human activated protein C reduces mortality in patients with severe sepsis, but trial data indicate that the benefit of the drug is confined to the more seriously ill patients, while the risk of bleeding complications can be considerable. The cost of the drug is approximately USD 6000-8000 per treated patient. Integration of this product into routine care has produced unique challenges concerning clinical decision making, safety and cost. OBJECTIVES: To describe one hospital's multidisciplinary approach to the adoption of this new medication. METHODS: Before activated protein C was approved for use, Brigham and Women's Hospital (BWH) convened a working group to formulate clinical guidelines proactively. This new agent did not fit into an obvious therapeutic category but cut across multiple clinical disciplines requiring the involvement of several hospital departments in developing policy. As new data on efficacy emerged during the US FDA review of the drug, the working group had to devise a method for using the available information to assist clinical decision making while placing appropriate restrictions on the use of activated protein C. The goal was to make accurate information available to guide ordering physicians' decision making interactively, 24 hours a day. RESULTS: The committee developed a utilisation policy for activated protein C that provided guidance on patient selection, contraindications and risk stratification. Interactive computer-based order entry screens were developed to guide physicians through a complex set of clinical criteria to ensure appropriate evidence-based use. A careful review of contraindications is required as a second step. To risk stratify patients in accordance with the trial subset analyses and the FDA labelling guidelines, ordering physicians are guided in calculating an APACHE II (Acute Physiology and Chronic Health Evaluation) score for the patient. Physicians from several specialties are available for advice and consultation on patients with difficult or controversial conditions. Approximately two-thirds of completed orders passed the clinical algorithm; an additional 35% of patients did not meet the medication criteria but received the drug after the attending physician requested an override of the guidelines. CONCLUSION: The BWH approach to activated protein C used an innovative multidisciplinary approach and computer-assisted order entry to guide clinical use of a new agent with substantial clinical efficacy, risks and costs. This approach provides a model for strategies to deal with other new and complex medical technologies.

Academic Medical Centers↗

PubMed1992

The impossibility and necessity of quality of life research.

There are probably a number of reasons why the medical community pays surprisingly little systematic attention to quality of life, either in research or in clinical care. Possibly our society's fascination with high technology and the rescue of endangered lives has encouraged the medical profession to focus on acute care, where their interventions can bring dramatic results. And perhaps because such high-tech acute care requires great knowledge and skill, medical educators have not devoted as much time to educating students and residents about the more mundane matters of medicine. Another reason, on which I will focus here, is the fact that scientific research into quality of life is particularly difficult, methodologically. It does not lend itself easily to the crisp, clean answers for which we strive in basic science. It is "soft," inexact, not "hard." In this article I hope to explain why such research is indeed fraught with hazard. The scientists are attempting a task that is, in a profound philosophical sense, impossible. They have no direct access to the data they most need, and every method of validating their results is fundamentally flawed. Nevertheless, I will also suggest how we can fruitfully undertake such research and, equally important, why we must.

Attitude↗

PubMed2002

Applying evidence and theory to guide clinical decision making--implications for asthma management.

Evidence-based medicine has been described as the "conscientious, explicit and judicious use of current best evidence in making decisions about the healthcare of individual patients". Many sources of information may be used by doctors when making decisions about initiating asthma therapy. These include: personal experience, postgraduate education, continuous professional development and publications in peer-reviewed journals. However, despite these sources of information, available data suggest that it is often difficult to practice evidence-based medicine, particularly in general practice. In the future, physicians will be provided with better evidence of the relative efficacy of treatment to aid changes in clinical practice. This will be provided, in part, by large well-conducted clinical trials, systematic reviews and meta-analyses. Linked with these, will be other methods of presenting data, for example, the number of patients needed to treat (NNT) to prevent one clinically significant event (for example, an asthma exacerbation). Despite these advances, incorporation of evidence-based practice into routine asthma care will be a slow and complex process. However, this process can be facilitated by physician education and participation in intervention programmes. In addition, it is important that clinicians are trained in how to convey the best possible evidence to their asthma patients.

Asthma↗

PubMed1983

[Pregnancy interruption from the pediatric viewpoint].

Therapeutic abortion is foremost a biological problem. The abrupt termination of the physiologic phenomenon of pregnancy is a sudden interference with the biology of the interaction between mother and fetus. Therapeutic abortion is also a psychological, a sociological and a political problem. Today therapeutic abortion is legal under certain condition and done by physicians. This review supports therapeutic abortion for prenatally determined abnormalities which have a scientifically high risk of defective offspring especially trisomy 21. Intensive genetic counselling prior to the therapeutic abortion is necessary. The last decision for the therapeutic abortion rests with the pregnant mother. The genetic medical problem is only part of the decision making since a number of familial, personal, religious and human factors are involved in the decision. The experience of the physician, his world view, his medical education, his knowledge of the psychological and physical and social anxieties of the pregnant patient also modify the decision making. The gynaecologist who carried out the therapeutic abortion needs to take these factors into account. Considering how difficult and depressing the development of severely mentally retarded persons is especially when they reach adulthood and how limited there life is by suffering, limitations and isolation therapeutic abortion is a valuable method to spare parents the stress of caring for severely mentally retarded offspring for years and decades.

Abortion, Therapeutic↗

PubMed1989

Who should have their cholesterol concentration measured? What experts in the United Kingdom suggest.

General practitioners are being encouraged to participate in preventive care, including preventing coronary heart disease. Now that they can measure cholesterol concentrations in their surgeries they need to decide which patients should be screened. Several reports on measuring cholesterol concentrations in the United Kingdom were reviewed to see if experts agreed about who ought to be screened. The results showed that currently no national consensus exists, making it difficult for general practitioners to plan policies for their patients.

Cholesterol↗

PubMed1999

The development of radiology guidelines in Canada, Part 2.

In the second part of a two-part article on the development of Canadian clinical practice guidelines in radiology, the author discusses the implementation of guidelines. The aim is to translate guidelines into practice policies, but nation-wide implementation is difficult because of the regional circumstances and constraints in Canadian health care. One approach to making guidelines more effective tools and preventing conflict is to distinguish between effectiveness (benefit of an intervention under average conditions of use) and efficiency (value of an intervention compared with other things that could be done with the same resources). Clinical practice guidelines are based on effectiveness criteria alone, whereas practice policies can be based on efficiency criteria and are made by those responsible for allocating resources. From an ethical point of view, guidelines have an important feature in common with applied ethics: neither can give the right answer in a situation, but both can indicate the right decision-making process, including who should decide, on what basis, using which process and for what purpose. From a legal standpoint, if the medical community views guidelines as constituting reasonable medical care and jurists see them as a medical and legal norm, they can have significant influence in malpractice litigation. At the last annual meeting of the CAR, the executive committee decided that an integrated national approach to guidelines is needed because of the considerable confusion in this field. It supports the National Framework Development Committee's efforts to set national principles and operating rules for development and implementation. This necessitates an organizational structure consisting of a coordinating group representing consumers, service providers, regulators and funding agencies; multidisciplinary guidelines-development groups; and methodology resource groups.

Canada↗

PubMed1984

Role adoption in residency training.

Two hundred residents in training in Wisconsin during 1982 responded to a survey that assessed attitudes, stressors, and coping strategies in each of three areas: work environment, role adoption, and personal life. Results indicate that successful role adoption (making difficult decisions, displaying leadership, dealing with uncertainty, being personally responsible for patients' care) is the primary task of residency, balanced by increasing stress in maintaining social support systems in family and peer groups. Coping strategies are directed at promoting role adoption and preserving personal ties. Work factors that accentuate the tension between these two aspects create the most distress. The degree to which role adoption is accomplished, the stress imposed, and coping strategies employed differed significantly with gender, specialty, and program type.

Adaptation, Psychological↗

PubMed1991

Job stressors and coping in health professions.

In spite of their knowledge about stressors, health hazards and coping, health professionals are in general not aware of their own health risks. In an attempt to clarify the issue results of our own studies are compared to the relevant literature. A survey on 1,248 Swiss nurses confirmed the major stressors known: ethical conflicts about appropriate patient care, team conflicts, role ambiguity, workload and organizational deficits. In doctors workload and shortage of time, combined with specific responsibility in decision making, are most prominent. Nevertheless, job satisfaction is still high in both professions. Health hazards in doctors are considerable, although life expectancy has improved and is comparable to the general public, but still lower as compared to other professionals. Depression and substance abuse are related to higher suicide rates. The specific role strain of female doctors is responsible for health risks with an alarming 10 years lower life expectancy than in the general population. Little is known about specific health hazards in nurses, except for burnout. A lack of coping research in the field makes conclusions difficult. Our own studies show limited coping skills in nurses, but good buffering effect in 1,700 Swiss dentists.

Adaptation, Psychological↗

PubMed1977

Health administrators and health education: some mixed feelings.

It is no secret that many health administrators still consider systematic or professional health education as a discipline towards which one has to pay a certain lip service, but which in its most common interpretation (i.e. imparting knowledge) has no formal place in the health services. Yet with the growing dissatisfaction of the public with the quality of health care and the growing costs incurred in the different parts of the health services, especially the hospital sector, the authorities could certainly use a skilled group of people, trained both in the health and medical fields and in pedagogic techniques, who would serve as a bridge between health services on the one side, and the population, and especially the politicians, on the other. In parts of the world where ignorance, superstition and harmful traditions still prevail, there is no doubt that health educators are of the utmost importance. In the more or highly developed parts of the world, where consumer participation in daily work and decision-making is becoming more and more common and more and more difficult, there is an urgent need for education of the public and politicians, and also of the medical profession in "community health" as different from "individual health". This is by far the most difficult task, and will require special training, both in background knoweledge and in techniques to reach the population. These considerations serve to reinforce the pressing demand of the World Health Organization for the "professionalization of health education activities without regard to the educational background of the agents who carry out the activity" -- an area where the International Union for Health Education has also an important responsibility.

Community Participation↗

PubMed2003

Development and implementation of a multi-centre information system for paediatric and infant critical care.

BACKGROUND: With no UK collective information system, a need existed to establish an integrated information system for public and private sector hospitals providing paediatric and infant critical care services. A lack of information in the past made it difficult for those procuring, providing and monitoring services to make informed, evidence-based decisions using reliable integrated data. OBJECTIVES: To develop and implement a collective multi-purpose information system for paediatric and infant critical care that was easily adaptable to any UK infant or paediatric critical care setting. Information outputs had to fulfil policy requirements and meet the needs of stakeholders. METHOD: Two minimum datasets, corresponding data definitions, survey forms and a user database were developed through a process of consultation by utilising an information partnership. Design, content, development and implementation issues were identified, discussed and resolved through a co-ordinated collaborative process. RESULTS: Data collection was implemented in all London and Brighton National Health Service (NHS) general and cardio-thoracic paediatric intensive care (PIC) units, several private PIC units and one NHS tertiary referral neonatal unit (NNU) 24 months from project start. CONCLUSIONS: The development of universal integrated information systems for defined settings of care is achievable within reasonable timeframes; however, successful development and implementation requires working within an information partnership to maximise co-ordination, co-operation and collaboration. Those collecting and using data must be identified and involved in all aspects of development from project start. Financial and manpower resources must be well planned. Datasets should be as small as possible in order to make the collection of complete and valid data realistically achievable. When considering service-based information needs, considerable thought should be given to a multi-purpose; multi-use approach based on the most refined minimum dataset possible.

Child↗

PubMedDate not supplied

Child welfare services for the catastrophically ill newborn: Part I--A confusion of responsibility.

The majority of these difficult bioethical decisions should properly be made by parents with input from physician and health care workers, utilizing the resources and guidance of infant ethics committees within the involved hospitals. The child protective service system should have the final authority, however, to assure that the decisions of the "caregivers" do not constitute abuse or neglect. This will require that the child welfare system sometimes walk the razor's edge between protecting the child's best interests and preserving, facilitating, and empowering families in these difficult circumstances. But this is an ethical dilemma the child welfare system negotiates daily, and is perhaps the reason used to justify assigning the child welfare system this responsibility. It will also require that the child welfare field have a consensus bioethical paradigm for treatment decision-making for children born with catastrophic illness. Consistent treatment decisions in the best interests of our most vulnerable children cannot be assured, or even expected, without such standardized guidelines.

Bioethical Issues↗