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Decision making with uncertain information: learning from women in a high risk breast cancer clinic.

Patients and practitioners may believe that clinically validated laboratory tests provide definitive information. Genetic counselors know this is not always so, and the possibility of inconclusive genetic test results is often discussed in the pretest counseling session. This added discussion topic prolongs the process of genetic counseling, but if there is inadequate patient understanding, patient frustration may be high when receiving a result of uncertain significance, and patients may make decisions about subsequent medical management based on incorrect assumptions. For patients/participants in a research setting, where the clinical validity of testing may be unclear, some patients/participants may still want to use test results to influence their medical management. This paper presents findings from a qualitative study wherein 15 women from the High Risk Breast Cancer Clinic at Utah's Huntsman Cancer Institute discussed how uncertainty regarding results affected their decision making. The women were randomly selected from 3 categories--women with test results of uncertain significance; women without cancer who have a mutation; and women who are members of high-risk families, but for whom no mutation was found. Study findings will be used in future studies to better understand how to improve communication regarding uncertain results, especially in a research environment.

Adult↗

[Development of a new instrument for the evaluation of the desire for information and decision making in patients with asthma].

The aim of this study was to design a new instrument for determining the asthmatic's desire for information as well as his or her active search for it and ability to make decisions about his or her disease. A questionnaire titled Information and Decisions in Asthma (IDEA) was compiled by writing a list of preliminary questions related to each of the three aforementioned aspects. The list was revised and the length reduced vased on the responses and signs of comprehension from a first group of patients. The draft under study then consisted of 36 items in the following subscales: desire for information (DI), active search for information (AS) and decision making (DM) in three scenarios describing stable asthma, mild exacerbation and severe exacerbation. The questionnaire was then administered to 120 adult asthmatic of both sexes whose disease was stable and at different levels of severity. Cronbach alpha coefficients were satisfactory for DI and AS (0.86 and 0.77, respectively) and did not improve with the elimination of any items. Factorial analysis overall for DI and AS (total explained variance = 44.16%) detected two correlated factors (r = 0.34, p < 0.01). The DM subscale contained problems of internal consistency which were solved by removing five items. Factorial analysis for DM then revealed a tri-factorial structure in which each factor adjusted well to each of the scenarios. Analysis of these results indicates that the final version of the IDEA shows very acceptable internal consistency and validity, suggesting that it could be used to assess the aspects it is intended to measure.

Analysis of Variance↗

Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity.

OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the ethics of involving family members in decision-making, particularly about end-of-life issues. DESIGN: Prospective multicenter study. SETTING: Forty-three French intensive care units (37 adult and six pediatric); each unit included 15 patients admitted for longer than 2 days. PATIENTS: Six hundred thirty-seven patients and 920 family members. INTERVENTIONS: Intensive care unit characteristics and data on the patient and family members were collected. Family members completed the Hospital Anxiety and Depression Scale to allow evaluation of the prevalence and potential factors associated with symptoms of anxiety and depression. MEASUREMENTS AND MAIN RESULTS: Of 920 Hospital Anxiety and Depression Scale questionnaires that were completed by family members, all items were completed in 836 questionnaires, which formed the basis for this study. The prevalence of symptoms of anxiety and depression in family members was 69.1% and 35.4%, respectively. Symptoms of anxiety or depression were present in 72.7% of family members and 84% of spouses. Factors associated with symptoms of anxiety in a multivariate model included patient-related factors (absence of chronic disease), family-related factors (spouse, female gender, desire for professional psychological help, help being received by general practitioner), and caregiver-related factors (absence of regular physician and nurse meetings, absence of a room used only for meetings with family members). The multivariate model also identified three groups of factors associated with symptoms of depression: patient-related (age), family-related (spouse, female gender, not of French descent), and caregiver-related (no waiting room, perceived contradictions in the information provided by caregivers). CONCLUSIONS: More than two-thirds of family members visiting patients in the intensive care unit suffer from symptoms of anxiety or depression. Involvement of anxious or depressed family members in end-of-life decisions should be carefully discussed.

Anxiety↗

Supporting decision making and action selection under time pressure and uncertainty: the case of in-flight icing.

Operators in high-risk domains such as aviation often need to make decisions under time pressure and uncertainty. One way to support them in this task is through the introduction of decision support systems (DSSs). The present study examined the effectiveness of two different DSS implementations: status and command displays. Twenty-seven pilots (9 pilots each in a baseline, status, and command group) flew 20 simulated approaches involving icing encounters. Accuracy of the decision aid (a smart icing system), familiarity with the icing condition, timing of icing onset, and autopilot usage were varied within subjects. Accurate information from either decision aid led to improved handling of the icing encounter. However, when inaccurate information was presented, performance dropped below that of the baseline condition. The cost of inaccurate information was particularly high for command displays and in the case of unfamiliar icing conditions. Our findings suggest that unless perfect reliability of a decision aid can be assumed, status displays may be preferable to command displays in high-risk domains (e.g., space flight, medicine, and process control), as the former yield more robust performance benefits and appear less vulnerable to automation biases.

Accidents, Aviation↗

Enhancing orthopaedic nurses' clinical decision making.

Clinical decision making ability is necessary for safe and effective orthopaedic nursing practice. By clinical decision making, we mean the rendering of a judgment about patient care using analytical and intuitive processes and incorporating professional knowledge. Although recent research findings indicate that there is no single approach that clinicians use to make all decisions, there are several general aspects of decision making processes. Among these are the development of mental representations, decision-making procedures, and pattern recognition. Five selected strategies for enhancing these general processes are described and illustrated with patient situations relevant to orthopaedic nursing.

Clinical Competence↗

[Making Decisions on the Resources for Cancer Control]

We aim at modelling the strategic decision making process in case of devoting resources to a governmental cancer control program. We use a model based on the theory of Analytic Hierarchy Process. In this article we describe the characteristic features of such a decision making process and reveal the complexity of the problem underlying the decisions. A second article will present and discuss the results from the application of the AHP model. Interventions which are capable of decreasing the burden of cancer in a society need strategic approach. Decisions on interventions seem inevitable to be based on and balance between the priorities and the available resources. There is not much doubt about it that the reason for setting the priorities arises on the one hand from the scarcity of resources. On the other hand, priorities evolve on other bases, and are supposed to "guide" health policy makers devoting the scarce resources. In general, a strategic mode of thought has been based on assumptions, which, in case of cancer control enhance the necessity to assess information on cancer and cancer patients, and to understand the factors contributing towards better health. The capabilities of the NCCP achieving its aims by preventing the development of cancer diseases (primary prevention), by making use of the means of early detection and appropriate therapy (secondary prevention), and by providing modern (comprehensive) tertiary prevention are inevitably affected by the priorities. Health policy should assume a responsibility for enforcing certain priorities and should be aware of the long-term interest of the population. To solve the problem we restrict the model to a simple three level one, representing the goals, the criteria, and the alternatives of the resource allocation. We determine "decreasing the burden of cancer" as the overall goal. "Distributive justice" "cost-effectiveness", "human rights", "evidences", and "standpoints of a community" serve as criteria, while "primary prevention", "early detection and therapy, both belonging to the secondary prevention", "tertiary prevention", "research", and "education" form the alternatives.

Journal Article↗

Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool.

Families, as a unit, play an important role in the process of making decisions about care for and with adult cancer patients. Families often step in as the patient's advocate and primary decision-maker as the patient's condition deteriorates. How well caregivers fulfill that role may depend on the level of congruence between the family members and the patient. Disagreements may jeopardize processes of decision-making and treatment choice. To facilitate the clinical assessment process and to provide a tool for research, we are designing an instrument that can validly and reliably assess the level of family discord concerning the treatment of late stage cancer as they consider participation in clinical trials, palliative care and salvage treatment such as chemotherapy designed to decrease tumor burden without hope of cure. Development of the instrument is a four step process to develop and test the instrument: (1) formative interviewing with lung cancer patients and their family caregivers to identify and develop a comprehensive list of domains and items; (2) refinement of the items' wording with a sample of 43 patients and 67 family caregivers; (3) testing the reduced item pool to determine statistical and content validity and reliability with an initial of sample of 42 patients and their primary caregivers; (4) examination of the 30-item scale's properties with 160 lung cancer patients and their primary caregivers.

Attitude to Health↗

A method for evaluating health care providers' decision making: the Provider Decision Process Assessment Instrument.

Valid and reliable assessment of the clinical decision-making process is essential for the evaluation of decision aiding methods and effective quality assurance programs. The Provider Decision Process Assessment Instrument is a 12-item questionnaire that measures a health care provider's degree of comfort with a medical decision. Its measurement properties were studied in two general internal medicine practices. Reliability, measured using Cronbach's alpha, was 0.90 (95% Cl = 0.87 to 0.92). Construct validity was also high, with expected negative correlations ranging from -0.53 to -0.67. The instrument also satisfied standard criteria for item homogeneity and was readily completed by clinicians. These results suggest that the Provider Decision Process Assessment Instrument will prove to be a valuable tool for assessing medical decision making in busy clinical settings.

Decision Making↗

[Decision-making and delusion. A study on decision-making in delusional, depressive and healthy subjects].

Delusion as a phenomenon was always in the focus of psychiatric interest. Explanations for its origin reach from disturbed perception or affect to deficits in cognition. In our study we investigated 20 deluded, 20 depressive and 20 healthy subjects in order to find out differences in decision making, while a neutral test situation. Our hypothesis was that deluded subjects need less information for decision making and tend less to change their decision, made before, than both control groups will do this. For examination our hypothesis a modified version of "Probabilistic Inference Task" by Philips and Edwards was performed. In summary we found that deluded subjects need less information for decisions making than the control groups. Furthermore, decision making of deluded subjects seems more impulsive and less referring to formal logical criteria than it was found in depressed and healthy volunteers.

Adult↗

Computerisation and decision making in neonatal intensive care: a cognitive engineering investigation.

This paper reports results from a cognitive engineering study that looked at the role of computerised monitoring in neonatal intensive care. A range of methodologies was used: interviews with neonatal staff, ward observations, and experimental techniques. The purpose was to investigate the sources of information used by clinicians when making decisions in the neonatal ICU. It was found that, although it was welcomed by staff, computerised monitoring played a secondary role in the clinicians' decision making (especially for junior and nursing staff) and that staff used the computer less often than indicated by self-reports. Factors that seemed to affect staff use of the computer were the lack (or shortage) of training on the system, the specific clinical conditions involved, and the availability of alternative sources of information. These findings have relevant repercussions for the design of computerised decision support in intensive care and suggest ways in which computerised monitoring can be enhanced, namely: by systematic staff training, by making available online certain types of clinical information, by adapting the user interface, and by developing intelligent algorithms.

Attitude to Computers↗

Non-invasive Mechanical Ventilation Enhances Patient Autonomy in Decision-Making Regarding Chronic Ventilation.

OBJECTIVE: Patients with respiratory failure due to progressive muscle weakness often require chronic ventilatory support, but many do not make decisions regarding ventilation prior to a crisis. We studied the use of non-invasive ventilation as a tool to enable communication and facilitate decision-making regarding chronic ventilation. METHODS: Patients with profound muscle weakness and acute respiratory failure, were supported or weaned by non-invasive positive or negative pressure ventilation. The patients were then interviewed and their informed autonomous decisions were used to plan their future management. RESULTS: Non-invasive ventilation could be used safely to support patients with acute respiratory failure until decisions regarding chronic ventilation are made and as an alternative means of ventilation for those who refuse tracheostomy. CONCLUSIONS: Non-invasive ventilation may be used in patients with profound muscle weakness, as a means of enhancing patient autonomy by improving communication and maintaining ventilation until decisions about ongoing care are made.

Journal Article↗

How proxies make decisions about research for patients with Alzheimer's disease.

We examined the proxy decision-making and informed consent processes for clinical research involving 49 patient-subjects with dementia in an outpatient setting by performing serial in-depth, structured, open-ended telephone interviews. Interviews were tape recorded and transcribed. Transcripts were then coded and analyzed. Although in all cases proxy consent was obtained for research from a legally authorized representative, proxies reported considerable ambiguity regarding who made the decision to participate in research, or to what degree the decision was that of the proxy or of the patient. Reasons proxies gave for participating in research included: hope of direct or indirect benefits to the patient, caregiver, or patient's descendents; desperation; trust in the investigator; belief in the goodness of research; and altruism. These reasons varied according to the type of research. For instance, in drug trials hope of direct benefit prevailed; in studies not evaluating a potential therapy more altruistic concerns predominated. Being a proxy decision maker for research can be burdensome. The degree of burden related to making a decision to participate in research seems influenced by a number of intersecting factors, most importantly, the risk and nature of the study, the extent to which patients were able to participate in the decision, and the duration and severity of dementia. Proxy decision-making concerning participation in research for patients with dementia can be a difficult task. The process might be improved by emphasizing that proxy consent is being sought because the nature of the patient's underlying medical condition can preclude the ability to make meaningful decisions. In addition, clinical researchers should recognize that giving proxy consent might place additional burdens on caregivers and discuss this explicitly when proxy consent is solicited.

Aged↗

Computer-assisted decision making in portal verification--optimization of the neural network approach.

PURPOSE: Conventional portal verification requires that a qualified radiation oncologist make decisions as to the set-up acceptability. This scheme is no longer sustainable with the large numbers of images available on-line and stringent time constraints. Therefore the objective of this study was to develop, optimize, and evaluate on clinical data an artificial intelligence decision-making tool for portal verification. The tool, based on the artificial neural network (ANN) approach, should approximate, as closely as possible, portal verification assessments made by a radiation oncologist expert. METHODS AND MATERIALS: A total of 328 electronic portal images of tangential breast irradiations were included in the study. A radiation oncologist expert evaluated these images and rated the treatment set-up acceptability on a scale from 0 to 10. Translational and rotational errors in the placement of the radiation field boundaries formed seven-dimensional feature vectors that represented each of the 328 portal images/treatments. The feature vectors were used as inputs to a three-layer, feedforward ANN. The neural network was trained on the oncologist's ratings. RESULTS: The rms discrepancy between the ANN and the expert's ratings was 1.05 rating points. Using the decision threshold equal to 5 for both sets of ratings, the ANN classifier was capable of detecting 100% of the portals classified as "unacceptable" by the expert. Only 6.5% of portals acceptable to the oncologist were misclassified as "unacceptable" by the ANN. CONCLUSION: The results of this study indicate the feasibility of using the ANN portal image classifier as an automated assistant to the radiation oncologist. Its role would be to recommend an appropriate decision as to the acceptability or otherwise of a given treatment set-up depicted in a portal image.

Breast Neoplasms↗

Decision making about children's therapy.

This paper presents the problematic features of making decisions related to the assessment and treatment of children, highlighting the importance of the diagnostic procedure in determining the need and type of therapy. Difficulties in assessing children are discussed in terms of the reliability of assessors, evaluation techniques, information sources, and children's functioning in different settings. Unique, complicating childhood characteristics are depicted: most disorders' normative basis in children's development; rapid, continuous change; gaps between cognitive, affective, behavioral, and chronological developmental stages; and high spontaneous recovery rates. Within an emphasis on the therapist's need for self-awareness and flexibility of child assessment and treatment methods, decision-making guidelines to evaluate the need for therapy are suggested and case examples are provided.

Child↗

Risk estimation as a decision-making tool for genetic analysis of the breast cancer susceptibility genes. EC Demonstration Project on Familial Breast Cancer.

For genetic counselling of a woman on familial breast cancer, an accurate evaluation of the probability that she carries a germ-line mutation is needed to assist in making decisions about genetic-testing. We used data from eight collaborating centres comprising 618 families (346 breast cancer only, 239 breast or ovarian cancer) recruited as research families or counselled for familial breast cancer, representing a broad range of family structures. Screening was performed in affected women from 618 families for germ-line mutations in BRCA1 and in 176 families for BRCA2 mutations, using different methods including SSCP, CSGE, DGGE, FAMA and PTT analysis followed by direct sequencing. Germ-line BRCA1 mutations were detected in 132 families and BRCA2 mutations in 16 families. The probability of being a carrier of a dominant breast cancer gene was calculated for the screened individual under the established genetic model for breast cancer susceptibility, first, with parameters for age-specific penetrances for breast cancer only [7] and, second, with age-specific penetrances for ovarian cancer in addition [20]. Our results indicate that the estimated probability of carrying a dominant breast cancer gene gives a direct measure of the likelihood of detecting mutations in BRCA1 and BRCA2. For breast/ovarian cancer families, the genetic model according to Narod et al. [20] is preferable for calculating the proband's genetic risk, and gives detection rates that indicate a 50% sensitivity of the gene test. Due to the incomplete BRCA2 screening of the families, we cannot yet draw any conclusions with respect to the breast cancer only families.

Adult↗

Exploring the development of sun-tanning behavior: a grounded theory study of adolescents' decision-making experiences with becoming a sun tanner.

A grounded theory study was undertaken to describe how adolescents make decisions about sunbathing during the transition from childhood to adolescence and to propose an explanation for the relationships among factors affecting the adoption of sun tanning. In-depth interviews (n = 40) were conducted separately with adolescents (aged 12 to 16 years) and their parents. Constant comparative analysis of adolescents' accounts identified two methods that adolescents described as a means of getting a suntan: intentional sun tanning and incidental sun tanning. The process of adolescents' decision-making about getting a suntan can be understood by examining the following sequence: becoming motivated to get a tan, experimenting with sun tanning, and establishing self as an intentional tanner or incidental tanner. Implications for developing strategies to prevent the adoption of sun-tanning habits among adolescents are presented.

Adolescent↗