Assessment model for the justification of intrusive lifestyle interventions: literature study, reasoning and empirical testing.

BACKGROUND: In many countries health insurers, employers and especially governments are increasingly using pressure and coercion to enhance healthier lifestyles. For example by ever higher taxes on cigarettes and alcoholic beverages, and ever stricter smoke-free policies. Such interventions can enhance healthier behaviour, but when they become too intrusive, an unfree society can emerge. Which lifestyle interventions that use pressure or coercion are justifiable and which are not? We tried to develop an assessment model that can be used for answering this question, on a generally acceptable way, for all sorts of lifestyle interventions. METHODS: The intended assessment model was developed in three phases. In the first phase the model was theoretically developed on the basis of literature study and reasoning. In the second phase the model was empirically tested by assessing two detailed cases from everyday practice using the model. The model was improved again and again. In the third phase (publication phase) the 10(th) version of the model was developed while writing this article. RESULTS: An assessment model for the justification of intrusive lifestyle interventions. It comprises three components: (1) 12 assessment criteria (necessity, causality, responsibility, appropriate design, effectiveness, intrusiveness, burdens-benefits-ratio, fairness, support, complementary policies, verifiability, implementation capacity); (2) an assessment structure with three filters (design logic, effects and side effects, implementation); (3) a way of assessing (based on reasonableness and transparency). CONCLUSIONS: We have developed an assessment model for the justification of lifestyle interventions that use pressure or coercion to promote health. The correctness, completeness and practicality of the model are likely. Important principles for the justification are the logic and completeness of the underlying argumentation and the proper use of the available scientific information. Parties for and against a particular intervention could use the model to test and strengthen their argumentation and to improve the quality of the intervention.

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care.

BACKGROUND: An international discussion about whether or not to legally permit euthanasia and (or) physician assisted suicide (EAS) is ongoing. Unbearable suffering in patients may result in a request for EAS. In the Netherlands EAS is legally permitted, and unbearable suffering is one of the central compulsory criteria. The majority of EAS is performed in cancer patients in the primary care practice. In around one in every seven end-of-life cancer patients dying in the primary care setting EAS is performed. The prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS was studied in a cohort of end-of-life cancer patients in primary care. METHODS: A prospective study in primary care cancer patients estimated to die within six months was performed. Every two months suffering was assessed with the State-of-Suffering V (SOS-V). The SOS-V is a comprehensive instrument for quantitative and qualitative assessment of unbearable suffering related to 69 physical, psychological and social symptoms in five domains. RESULTS: Out of 148 patients who were asked to participate 76 (51%) entered the study. The studied population were 64 patients who were followed up until death; 27% explicitly requested EAS, which was performed in 8% of the patients. The final interview per patient was analyzed; in four patients the SOS-V was missing. Unbearable symptoms were present in 94% of patients with an explicit request for EAS and in 87% of patients without an explicit request. No differences were found in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, nor for overall unbearable suffering, between patients who did or who did not explicitly request EAS. CONCLUSIONS: In a population of end-of-life cancer patients cared for in primary care no differences in unbearable suffering were found between patients with and without explicit requests for EAS. The study raises the question whether unbearable suffering is the dominant motive to request for EAS. Most patients suffered from unbearable symptoms, indicating that the compulsory criterion of unbearable suffering may be met a priori in most end-of-life cancer patients dying at home, whether they request EAS or not.

Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study.

BACKGROUND: Primary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care. METHODS: 44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering. RESULTS: Out of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall. CONCLUSIONS: Weakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.

Does public disclosure of quality indicators influence hospitals' inclination to enhance results?

OBJECTIVE: The national guideline on oesophageal carcinoma's recommendation of a minimum number of 10 resections per year and the intervention of the Dutch Health Care Inspectorate have highlighted hospitals' 'need to score' on the public quality indicator for the annual number of oesophageal resections. To determine whether low-volume hospitals are inclined to adjust their numbers, we studied the difference between the reported and actual numbers of oesophageal resections in 2005 and 2006. DESIGN: A retrospective cohort study. Hospitals were asked to submit all operative reports on resections from 2005 to 2006. Two pairs of evaluators independently labelled all anonymous operative reports from the selected hospitals as resection or non-resection. SETTING: Hospitals in the Netherlands. PARTICIPANTS: Ten hospitals that reported 10 or 11 resections in 2006, or an average of fewer than 10 resections per year in the period 2003-2006. INTERVENTIONS: None. MAIN OUTCOME MEASURE(S): Difference between the reported and actual numbers of oesophageal resections in 2005 and 2006. RESULTS: Oesophageal resection criteria were not met in 7% of the 179 operative reports from the 10 selected hospitals. The difference between the reported and actual numbers of resections in 2005 was not significant, while in 2006 it was. Of the hospitals studied, 70% actually performed fewer resections than they reported. CONCLUSION: Our results support the assumption that low-volume hospitals are inclined to adjust their numbers when, because outcomes are public, pressure to report a sufficient number is high. So, external verification of data is essential when this 'need to score' is high.

The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care.

BACKGROUND: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care. METHODS: Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions. RESULTS: Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering. CONCLUSIONS: Overall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management.

The role of patient safety culture in the causation of unintended events in hospitals.

AIMS AND OBJECTIVES: To examine whether the relationship between specialty and patient safety is mediated by safety culture. BACKGROUND: Research has shown that patient safety in hospitals varies by specialty. The safety culture among healthcare professionals in hospital units is believed to influence safety performance. If there is a mediation effect of safety culture in the relationship between specialty and safety, then safety culture could explain why units vary in performance. DESIGN: Cross-sectional observational study in 28 units of 20 hospitals in the Netherlands. Units were of three specialties: emergency medicine, surgery and internal medicine. METHODS: Safety culture was measured with the Dutch version of the Hospital Survey on Patient Safety Culture with 11 culture dimensions (n = 542; response 56%). Safety outcomes were types of unintended events (six types). Unintended events were collected through staff reporting (n = 1885 events). Data were examined using multilevel regression analysis. RESULTS: The overall safety culture in the units did not mediate the relationship between specialty and the safety outcomes (event types), but three of the 11 dimensions showed significant mediation on one or more event types: non-punitive response to error, hospital management support and willingness to report. CONCLUSIONS: Only a few safety culture dimensions mediated the relationship between specialty and some of the outcomes, with 'willingness to report' as the most important mediating factor. Our study did not give strong evidence that specialties differ in performance because of their safety cultures. More research into the causes of variation in patient safety between hospital units is needed. RELEVANCE TO CLINICAL PRACTICE: Our study could not give support for the claim that safety culture is a key factor affecting patient safety.

To what extent are adverse events found in patient records reported by patients and healthcare professionals via complaints, claims and incident reports?

BACKGROUND: Patient record review is believed to be the most useful method for estimating the rate of adverse events among hospitalised patients. However, the method has some practical and financial disadvantages. Some of these disadvantages might be overcome by using existing reporting systems in which patient safety issues are already reported, such as incidents reported by healthcare professionals and complaints and medico-legal claims filled by patients or their relatives. The aim of the study is to examine to what extent the hospital reporting systems cover the adverse events identified by patient record review. METHODS: We conducted a retrospective study using a database from a record review study of 5375 patient records in 14 hospitals in the Netherlands. Trained nurses and physicians using a method based on the protocol of The Harvard Medical Practice Study previously reviewed the records. Four reporting systems were linked with the database of reviewed records: 1) informal and 2) formal complaints by patients/relatives, 3) medico-legal claims by patients/relatives and 4) incident reports by healthcare professionals. For each adverse event identified in patient records the equivalent was sought in these reporting systems by comparing dates and descriptions of the events. The study focussed on the number of adverse event matches, overlap of adverse events detected by different sources, preventability and severity of consequences of reported and non-reported events and sensitivity and specificity of reports. RESULTS: In the sample of 5375 patient records, 498 adverse events were identified. Only 18 of the 498 (3.6%) adverse events identified by record review were found in one or more of the four reporting systems. There was some overlap: one adverse event had an equivalent in both a complaint and incident report and in three cases a patient/relative used two or three systems to complain about an adverse event. Healthcare professionals reported relatively more preventable adverse events than patients.Reports are not sensitive for adverse events nor do reports have a positive predictive value. CONCLUSIONS: In order to detect the same adverse events as identified by patient record review, one cannot rely on the existing reporting systems within hospitals.

Variation in the rates of adverse events between hospitals and hospital departments.

OBJECTIVE: The objective of this study was to analyze the variation in the rates of adverse events (AEs), and preventable AEs, between hospitals and hospital departments in order to investigate the room for improvement in reducing AEs at both levels. In addition, we explored the extent to which patient, department and hospital characteristics explain differences in the rates of AEs. DESIGN: Structured retrospective patient record review of hospital admissions. SETTING: Twenty-one Dutch hospitals. Population A representative random sample of 7113 hospital admissions in 2004. MAIN OUTCOME MEASURES: Variation in AEs, and preventable AEs, between hospitals and hospital departments and the explanatory factors of the variation. RESULTS: The rates of AEs varied between hospitals (P = 0.05) and hospital departments (P < 0.05). The rates of preventable AEs only varied significantly between hospital departments. The clustering of preventable AEs in hospital departments was more than twice that found in hospitals (ICC 9.5 versus 3.5%). The type of hospital explained 35% of the inter-hospital variance in AEs. Patient and department characteristics explained 23% of the inter-department variance in preventable AEs. CONCLUSIONS: In addition to interventions to improve the overall patient safety within a hospital, interventions tailored for specific departments are necessary to reduce their patient safety risks. Monitoring and comparing the performance of hospitals should not be limited to the hospital level, but should be extended to the individual department since there can be significant differences in the rates of preventable AEs between different departments within the same hospital.

End-of-life practices in the Netherlands under the Euthanasia Act.

BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. METHODS: We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. RESULTS: In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. CONCLUSIONS: The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.

Prescribing of pain medication in palliative care. A survey in general practice.

PURPOSE: To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands. METHODS: In a nationwide, representative, prospective study in general practice in The Netherlands, prescribed medication was registered in 95 general practices with a listed population of 374 070 patients. The GPs identified those who received palliative care in a retrospective survey of the 2169 patients who died within the 1-year study period. We analysed the analgesics, laxatives and anti-emetics that were prescribed during the last 3 months of life for these patients. RESULTS: The response rate of the survey was 74%. 425 patients received palliative care and 73% of them were prescribed pain medication: 55% a non-opioid analgesic (paracetamol, NSAIDs), 21% a weak opioid (tramadol, codeine), and 51% a strong opioid. Relatively more younger than older patients were prescribed strong opioids, and more cancer than non-cancer patients were prescribed an analgesic. During the last 3 months of life, the proportion of patients prescribed a non-opioid or a weak opioid increased gradually. The proportion of patients prescribed a strong opioid increased considerably nearing the patient's death. About one third of the non-cancer patients were prescribed strong opioids, mostly commencing in the last 2 weeks before death. In 48% of all patients with an opioid prescription, the GP did not prescribe a laxative. CONCLUSIONS: Weak opioids and laxatives are frequently omitted from pain regimens in palliative care at home in The Netherlands.

Euthanasia requests and cancer types in the Netherlands: is there a relationship?

PURPOSE: Cancer patients have generally requested for euthanasia and assisted suicide (EAS) more frequently than others. However, different terminal cancers are accompanied by different clinical courses. This study seeks to explore the relationship, if any, between EAS requesters and cancer types, as relates to the provision of end-of-life care in the Netherlands. METHODS: Standardized questionnaires were retrospectively sent to all general practitioners (GPs) in 10 of 23 GP-districts in the Netherlands. Of the 3614 respondents (60%), 1442 could describe a most recent EAS request from a cancer patient. RESULTS: Compared to all home cancer deaths, lung, pancreas, stomach oesophagus, lip-mouth-throat cancers and melanomas occur more frequently in the group of cancer patients who requested for EAS; while prostate, haemo-lymphatic, urinary tract, bladder and uterus cancer occur relatively less frequently. Vomiting, shortness of breath and anxiousness were symptoms positively associated, and old age was negatively associated with cancers in which patients relatively frequently request for EAS. CONCLUSION: There are differences in the extent to which patients with different cancer types request for EAS. Although shortness of breath, vomiting and anxiousness are associated with cancer types in which patients relatively frequently request for EAS, most symptoms are not associated with this. Possibly a common pathway, including more existential concerns, is important in the last stages of life.

Design of a study on suboptimal cognitive acts in the diagnostic process, the effect on patient outcomes and the influence of workload, fatigue and experience of physician.

BACKGROUND: Diagnostic error is an important error type since diagnostic adverse events are regularly judged as being preventable and the consequences are considered to be severe. Existing research often focuses on either diagnostic adverse events or on the errors in diagnostic reasoning. Whether and when an incorrect diagnostic process results in adverse outcomes has not been studied extensively. The present paper describes the design of a study that aims to study the relationship between a suboptimal diagnostic process and patient outcomes. In addition, the role of personal and circumstantial factors on the quality of the diagnostic process will be examined. METHODS/DESIGN: The research questions were addressed using several data sources. First, the differential diagnosis was assessed concurrently to the diagnostic process. Second, the patient records of 248 patients suffering from shortness of breath were reviewed by expert internists in order to reveal suboptimal cognitive acts and (potential) consequences for the patient. The suboptimal cognitive acts were discussed with the treating physicians and classified with the taxonomy of unsafe acts. Third, workload, fatigue and work experience were measured during the physicians work. Workload and fatigue were measured during the physicians shift using the NASA tlx questionnaire on a handheld computer. Physicians participating in the study also answered questions about their work experience. DISCUSSION: The design used in this study provides insight into the relationship between suboptimal cognitive acts in the diagnostic process and possible consequences for the patient. Suboptimal cognitive acts in the diagnostic process and its causes can be revealed. Additional measurements of workload, fatigue and experience allow examining the influence of these factors on the diagnostic process. In conclusion, the present design provides a method with which insights in weaknesses of the diagnostic process and the effect on patient outcomes can be studied and opportunities for improvement can be obtained.

Direct medical costs of adverse events in Dutch hospitals.

BACKGROUND: Up to now, costs attributable to adverse events (AEs) and preventable AEs in the Netherlands were unknown. We assessed the total direct medical costs associated with AEs and preventable AEs in Dutch hospitals to gain insight in opportunities for cost savings. METHODS: Trained nurses and physicians retrospectively reviewed 7,926 patient records in 21 hospitals. Additional patient information of 7,889 patients was received from the Dutch registration of hospital information. Direct medical costs attributable to AEs were assessed by measuring excess length of stay and additional medical procedures after an AE occurred. Costs were valued using Dutch standardized cost prices. RESULTS: The annual direct medical costs in Dutch hospitals were estimated at a total of euro 355 million for all AEs and euro 161 million for preventable AEs in 2004. The total number of hospital admissions in which a preventable AE occurred was 30,000 (2.3% of all admissions) and more than 300,000 (over 3% of all bed days) bed days were attributable to preventable AEs in 2004. Multilevel analysis showed that variance in direct medical costs was not determined by differences between hospitals or hospital departments. CONCLUSION: The estimates of the total preventable direct medical costs of AEs indicate that they form a substantial part (1%) of the expenses of the national health care budget and are of importance to hospital management. The cost driver of the direct medical costs is the excess length of stay (including readmissions) in a hospital. Insight in which determinants are associated with high preventable costs will offer useful information for policymakers and hospital management to determine starting points for interventions to reduce the costs of preventable AEs.

Policy statements and practice guidelines for medical end-of-life decisions in Dutch health care institutions: developments in the past decade.

OBJECTIVES: To describe the existence of policy statements on euthanasia and physician-assisted suicide (EAS) and practice guidelines for all medical end-of-life decisions in Dutch health care institutions in 2005, whether the existence of practice guidelines is related to characteristics of institutions, and to compare the existence of policies in 2005 and 1994. METHODS: Questionnaires were sent to 566 institutions (all Dutch hospitals, nursing homes, general psychiatric hospitals, institutions for the mentally disabled, hospices) from October 2005 through March 2006. RESULTS: Most institutions (70%) had a written policy statement concerning EAS. EAS was usually allowed under specific conditions (75%). Institutions mainly had practice guidelines for EAS and do-not-resuscitate decisions (62% and 63%). A minority had guidelines on palliative sedation (27%), alleviation of symptoms (27%) and withdrawing or withholding treatment (33%). In general, there were more practice guidelines in 2005 than in 1994. Larger institutions and institutions with an ethics committee more often had practice guidelines. Religious affiliation of an institution did not seem to be related to the existence of guidelines. CONCLUSIONS: Since many institutions still do not have practice guidelines for medical end-of-life decisions, they should be stimulated to introduce practice guidelines, being a first step in improving the quality of the care on institutional level.

Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

BACKGROUND: Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties. METHODS: Recognizing the conceptual difference between unbearability of suffering and extent or intensity of suffering, we developed an instrument. The compilation of aspects considered to be of importance was based on a literature search. Psychometric properties were determined on results of the first interviews with 64 end-stage cancer patients that participated in a longitudinal study in the Netherlands. RESULTS: The instrument measures five domains: medical signs and symptoms, loss of function, personal aspects, aspects of environment, and nature and prognosis of the disease. Sixty nine aspects were investigated, and an overall score was asked. In 64 end-stage cancer patients the instrument was used in total 153 times with an average interview time varying from 20-40 minutes. Cronbachs alpha's of the subscales were in majority above 0.7. The sum scores of (sub)scales were correlated strongly to overall measures on suffering. CONCLUSION: The SOS-V is an instrument for measuring the unbearability of suffering in end-stage cancer patients with good content validity and psychometric properties, which is feasible to be used in practice. This structured instrument makes it possible to identify and study unbearable suffering in a quantitative and patient-oriented way.

The nature and causes of unintended events reported at ten emergency departments.

BACKGROUND: Several studies on patient safety have shown that a substantial number of patients suffer from unintended harm caused by healthcare management in hospitals. Emergency departments (EDs) are challenging hospital settings with regard to patient safety. There is an increased sense of urgency to take effective countermeasures in order to improve patient safety. This can only be achieved if interventions tackle the dominant underlying causes. The objectives of our study are to examine the nature and causes of unintended events in EDs and the relationship between type of event and causal factor structure. METHODS: Study at EDs of 10 hospitals in the Netherlands. The study period per ED was 8 to 14 weeks, in which staff were asked to report unintended events. Unintended events were broadly defined as all events, no matter how seemingly trivial or commonplace, that were unintended and could have harmed or did harm a patient. Reports were analysed with a Root Cause Analysis tool (PRISMA) by an experienced researcher. RESULTS: 522 unintended events were reported. Of the events 25% was related to cooperation with other departments and 20% to problems with materials/equipment. More than half of the events had consequences for the patient, most often resulting in inconvenience or suboptimal care. Most root causes were human (60%), followed by organisational (25%) and technical causes (11%). Nearly half of the root causes was external, i.e. attributable to other departments in or outside the hospital. CONCLUSION: Event reporting gives insight into diverse unintended events. The information on unintended events may help target research and interventions to increase patient safety. It seems worthwhile to direct interventions on the collaboration between the ED and other hospital departments.

Understanding pregnant women's decision making concerning prenatal screening.

OBJECTIVE: This study is aimed at enhancing understanding prenatal screening decision making through testing a hypothesized decision model based on decision theory and health behavior theory. DESIGN: We obtained questionnaires from 1,666 pregnant women who were offered prenatal screening for Down's syndrome. Path analysis (using LISREL) resulted in a final model with reasonable model fit, which was verified by split-sample cross-validation. MAIN OUTCOME MEASURES: These included perceived probability, perceived severity, attitude toward termination, response efficacy, attitude toward prenatal screening, subjective norm, child-related anxiety, and intention to undergo prenatal screening. RESULTS: Attitude toward termination of pregnancy, perceived test efficacy, and subjective norm regarding the desirability of having prenatal screening determined a woman's attitude toward having a prenatal test. Anxiety was influenced by perceived risk and perceived severity of having a child with Down's syndrome, and by subjective norm, but this appeared to be a weak predictor of intention to test. Pregnant women with a positive attitude toward prenatal screening, and who perceived a subjective norm in favor of undergoing prenatal screening, showed a greater intention to have prenatal screening done. CONCLUSION: These findings suggest that more attention should be paid toward the values and social context of pregnant women during the counseling process.

Does offering prenatal screening influence pregnant women's attitudes regarding prenatal testing?

OBJECTIVES: This study aims to find out whether offering prenatal screening for Down syndrome and neural tube defects influences pregnant women's attitudes toward having a screening test. METHODS: Women were randomised into a group that was offered prenatal screening and a group that was not offered screening (controls). Both groups completed questionnaires before screening was offered, after the offer (not the control group), and in the last trimester of pregnancy. RESULTS: Women with a neutral attitude at baseline who accepted the screening test had a more positive attitude, decliners became more negative and the attitude of the control group did not change. CONCLUSION: Offering prenatal screening triggers a change in some pregnant women's attitude regarding prenatal testing. This instability of women's attitudes may pose a problem for determining whether some women made an informed choice.

Parents' perceived vulnerability and perceived control in preventing Meningococcal C infection: a large-scale interview study about vaccination.

BACKGROUND: Parents' reported ambivalence toward large-scale vaccination programs for childhood diseases may be related to their perception of the risks of side-effects or safety of vaccination and the risk of contracting the disease. The aim of this study is to evaluate parents' perceptions of their child's risk contracting a Meningococcal C infection and parents' perceived control in preventing infection in relation to their evaluation of the safety, effectiveness and usefulness of vaccination. METHODS: In a large-scale interview study, a random sample of parents was interviewed after their children had received vaccination against Meningococcal C in a catch-up campaign. Questions were asked about the perceived relative vulnerability of their child contracting an infection, perceived control in preventing an infection, and parents' evaluation of the safety, usefulness and effectiveness of vaccination. RESULTS: 61% of 2910 (N = 1763) parents who were approached participated. A higher perceived relative vulnerability of their own child contracting the disease was related to a more positive evaluation of the vaccination campaign, while a lower perceived vulnerability did not result in a more negative evaluation. A higher perceived control in being able to prevent an infection was, however, related to a more critical attitude toward the safety, usefulness and effectiveness of vaccination. CONCLUSION: Perceived relative vulnerability contracting an infection and parents' perceived control in preventing an infection seem to influence parents' evaluation of the vaccination programme. Future studies should determine if, and under which circumstances, these perceptions also affect parents' vaccination behaviour and would be relevant to be taken into account when educating parents about vaccination.

Correlations of knowledge and preference of medical students for a specialty career: a case-study of youth health care.

BACKGROUND: Medical students develop interest in a specialty career during medical school based on knowledge and clinical experience of different specialties. How valid this knowledge is and how this knowledge relates to the development of preference for a specialty is not known. We studied their "subjective" knowledge of a specialty (students' reported knowledge) with "objective" knowledge of it (students actual knowledge as compared to reports of specialists) and their preference for this specialty at different stages of education, and used youth health care as a case study. METHODS: Students from all years in two medical schools (N = 2928) were asked to complete a written questionnaire including (a) a statement of their knowledge of youth health care (YHC) ("subjective knowledge"), (b) their preference for a YHC career and (c) a list of 47 characteristics of medical practice with the request to rate their applicability to YHC. A second questionnaire containing the same 47 characteristics were presented to 20 practicing youth health physicians with the request to rate the applicability to their own profession. This profile was compared to the profiles generated by individual student's answers, resulting in what we called "objective knowledge." RESULTS: Correlation studies showed that "subjective knowledge" was not related to "objective knowledge" of the YHC profession (r = 0.05), but significantly to career preference for this field (r = 0.29, P < 0.01). Preference for a YHC career hardly correlated with objective knowledge about this profession (r = 0.11, P < 0.05). Students with YHC clerkships showed no better "objective knowledge" about the profession than students without such experience. CONCLUSION: Career preference aren't always related to prior experiences, or to actual knowledge of the area. This study shows how careful we should be to trust students' opinions and preferences about specialties; they probably need much guidance in career choice.