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Evaluation of a decision aid for patients considering autologous blood donation before open-heart surgery.

BACKGROUND: Patients undergoing open-heart surgery frequently require one or more blood transfusions. Because of the risks of receiving blood from volunteer donors, some patients choose to donate their own blood before surgery. This reduces their risk of exposure to volunteer-donated blood, but it increases their chance of receiving any transfusion, either of self-donated or volunteer-donated blood. Also, preoperative hemoglobin levels tend to be lower in patients who donate their own blood, and surgeons may be more likely to give transfusions to patients with self-donated blood. To help patients decide whether to donate their blood before surgery, we designed a decision aid comprising a booklet and audiotape and assessed its effectiveness. METHODS: The 59 study subjects were a sample of consecutive patients referred to the Ottawa Heart Institute between Oct. 1, 1998, and Jan. 5, 1999, for future coronary artery bypass grafting, valve surgery or combined surgery. All were eligible to donate blood. Initial questionnaires were administered in the clinic by a physician or study nurse, and follow-up questionnaires were completed at home and mailed in after use of the decision aid. Outcome measures included patients' knowledge, values (importance ratings), preferences for transfusion methods, decisional conflict (the amount of uncertainty about the course of action to take), risk perception and acceptability of the decision aid. RESULTS: Mean knowledge scores on a 15-item test increased from 67% correct responses before the decision aid to 85% correct responses after use of the aid (p < 0.001); the effect was similar when the patients were divided into subgroups according to education level. The number of patients favouring donating their own blood increased from 41 (69%) before to 45 (76%) after use of the aid. Nine (64%) of 14 initially uncertain patients preferred autologous donation after use of the aid. The overall mean score for decisional conflict was unchanged, at 1.7, which indicated a low level of uncertainty. Risk perception improved, from 0%-14% correct responses on an 8-item test before the aid to 18%-60% correct responses after use of the aid. The decision aid was acceptable to the majority of patients, and 95% indicated that they would recommend it to others. INTERPRETATION: The decision aid improved knowledge and risk perceptions of blood donation and transfusion, and it helped uncertain patients to make choices.

Adolescent↗

Health-related quality of life in Swedish patients with ulcerative colitis.

OBJECTIVE: The aim of this study was to characterize the health-related quality of life (HRQOL) in a Swedish population of patients with ulcerative colitis. METHODS: A total of 211 patients with ulcerative colitis were studied. Demographic and disease-related factors were noted. HRQOL was measured by one disease specific questionnaire, the Rating Form of IBD Patient Concerns (RFIPC) and one generic, The Sickness Impact Profile (SIP). Additional questions regarding information needs, medication, and well-being were asked. Disease activity was measured by symptom cards, laboratory samples, endoscopy, and two indices of disease activity. The influence of additional concomitant disease was also evaluated. RESULTS: Functional impairment as measured by the SIP was primarily in psychological and social areas and to a lesser extent in the physical areas. The highest scores for individual items of the RFIPC were those related to potential complications, e.g., needing an ostomy appliance, needing surgery, developing cancer, losing bowel control, and uncertainty about the disease and effects of medication. Patients with active disease scored higher on both SIP and RFIPC when compared to patients in remission. Presence of coexisting disease weighted heavily on HRQOL. CONCLUSION: Ulcerative colitis has a negative influence on the subjective functional status and seems to cause many worries and concerns. Patients in relapse had greater concerns, more impairment of functional status, and a reduced subjective sense of well-being than patients in clinical remission. Nevertheless, the patients in this Swedish study scored a much better HRQOL than has previously been reported using these questionnaires in patients with ulcerative colitis from the US, France, and Austria.

Adult↗

Decision making under uncertainty in case of soil remediation.

Decisions on soil remediation are one of the most difficult management issues of municipal and state agencies. The assessment of contamination is uncertain, the costs of remediation are high, and the impacts on the environment are multiple. This paper presents a general, transparent, and consistent method for decision making among the remediation alternatives. Soil washing, phytoremediation, and no remediation are exemplarily considered. Multi-criteria utility functions including (a) the cost of remediation (b) the impact on human health and agricultural productivity, and (c) the economic gain after remediation are constructed using probability density functions representing contamination for all site coordinates. Herewith, the probability of different types of (i) correct decisions such as a hit or a true rejection and (ii) erroneous decisions such as a false alarm or miss are examined. The decision theoretic model is applied to a case study on heavy metal contaminated soil. This case study reveals the non-linear structure of multi-criteria-decision making. The case study shows that the geostatistical uncertainties of the log-normal distributed soil contamination must be taken into account: When uncertainties are not considered and the utilities are assessed according to the estimated value for a spatial unit, only few (N=26) spatial units result where the utility score of the alternative soil washing are higher than the utility score to the no remediation alternative. However, when taking into account geostatistical uncertainties of the log-normal soil distribution this number is about ten times greater (N=237). Furthermore, the use of 'maximizing expected utility' as decision rule is critical in that it may lead to a high probability of misses.

Cadmium↗

Information retrieval for teaching files: a preliminary study.

A computer algorithm for information retrieval from an electronic teaching file has been developed. This index enables the user to retrieve cases from a teaching file, based on the input of a combination of features. The algorithm is based on nearest neighbor analysis, and is programmed in the "C" language. A teaching file with this index is very easy to use as a reference resource for diagnosing unknown cases. A model was developed for a preliminary test of how likely a user would be to review a teaching file case that is the same diagnosis as an unknown case, thereby reducing uncertainty of diagnosis. The model used 110 cases of arthritis radiographs of hands scored by a skeletal radiologist. The result of the model suggests that the correct diagnosis would be reviewed 83% of the time. A standard method of reducing uncertainty of diagnosis (the maximum likelihood discriminant function) would have picked the correct diagnosis 78% of the time. The results indicate that a teaching file with the computer index is a practical tool for dealing with the uncertainty in diagnosis of unknown cases. The computer index could be included with videodisc-based teaching files (such as the American College of Radiology files). Using teaching files as a reference for interpreting unknown cases may reduce interobserver variability.

Algorithms↗

Patient volume, staffing, and workload in relation to risk-adjusted outcomes in a random stratified sample of UK neonatal intensive care units: a prospective evaluation.

BACKGROUND: UK recommendations suggest that large neonatal intensive-care units (NICUs) have better outcomes than small units, although this suggestion remains unproven. We assessed whether patient volume, staffing levels, and workload are associated with risk-adjusted outcomes, and with costs or staff wellbeing. METHODS: 186 UK NICUs were stratified according to volume of patients, nursing provision, and neonatal consultant provision. Primary outcomes were hospital mortality, mortality or cerebral damage, and nosocomial bacteraemia. We studied 13515 infants of all birthweights consecutively admitted to 54 randomly selected NICUs. Multiple logistic regression analyses were done with every primary outcome as the dependent variable. Staff wellbeing and stress were assessed by anonymous mental health index (MHI)-5 questionnaires. FINDINGS: Data were available for 13334 (99%) infants. High-volume NICUs treated the sickest infants and had highest crude mortality. Risk-adjusted mortality and mortality or cerebral damage were unrelated to patient volume or staffing provision; however, nosocomial bacteraemia was less frequent in NICUs with low neonatal consultant provision (odds ratio 0.65, 95% CI 0.43-0.98). Mortality was raised with increasing workload in all types of NICUs. Infants admitted at full capacity versus half capacity were about 50% more likely to die, but there was wide uncertainty around this estimate. Most staff had MHI-5 scores that suggested good mental health. INTERPRETATION: The implications of this report for staffing policy, medicolegal risk management, and ethical practice remain to be tested. Centralisation of only the sickest infants could improve efficiency, provided that this does not create excessive workload for staff. Assessment of increased staffing levels that are closer to those in adult intensive care might be appropriate.

Bacteremia↗

Calibrated Prediction Intervals for Polygenic Scores: Updated Comparisons, Contextual Calibration, and Data Normalization.

Calibrated prediction intervals for polygenic scores (PGS) are essential for communicating individual-level uncertainty in genomic medicine. We present updated comparisons of two methods for constructing such intervals: CalPred, a parametric approach, and PredInterval, a non-parametric approach. Our results show that both methods can achieve calibrated coverage, although CalPred additionally requires a sufficiently large calibration set. The two methods also exhibit complementary trade-offs with respect to dataset size and risk identification. We further show that contextual calibration, as introduced in Hou et al. and followed in Shi et al., is most naturally achieved through appropriate phenotype normalization and data preprocessing. Apparent miscalibration can arise from inadequate normalization or from providing contextual information to some methods but not others. In UK Biobank, standard GWAS phenotype normalization procedures are sufficient to achieve contextual calibration for traits analyzed. In the extreme simulations of Hou et al. and Shi et al., supplying contextual covariates to PredInterval restores contextual calibration without normalization, and appropriate normalization can achieve contextual calibration without supplying covariates, while also substantially improving upstream tasks including association power and PGS accuracy. Together, these results underscore the central role of phenotype normalization and data preprocessing in GWAS analyses, including reliable uncertainty quantification for PGS.

Journal Article↗

Estimating the cost-effectiveness of fluticasone propionate for treating chronic obstructive pulmonary disease in the presence of missing data.

OBJECTIVES: To explore the cost-effectiveness of fluticasone propionate (FP) for the treatment of chronic obstructive pulmonary disease (COPD), we estimated costs and quality-adjusted life-years (QALYs) over 3 years, based on an economic appraisal of a previously reported clinical trial (Inhaled Steroids in Obstructive Lung Disease in Europe [ISOLDE]). METHODS: Seven hundred forty-two patients enrolled in the ISOLDE trial who received either FP or placebo had data available on health-care costs and quality of life over the period of the study. The SF-36-based utility scores for quality of life were used to calculate QALYs. A combined imputation and bootstrapping procedure was employed to handle missing data and to estimate statistical uncertainty in the estimated cumulative costs and QALYs over the study period. The imputation approach was based on propensity scoring and nesting this approach within the bootstrap ensured that multiple imputations were performed such that statistical estimates included imputation uncertainty. RESULTS: Complete data were available on mortality within the follow-up period of the study and a nonsignificant trend toward improved survival of 0.06 (95% confidence interval [CI]-0.01 to 0.15) life-years was observed. In an analysis based on a propensity scoring approach to missing data we estimated the incremental costs of FP versus placebo to be 1021 sterling pound(95% CI 619-1338 sterling pound) with an additional effect of 0.11 QALYs (CI 0.04-0.20). Cost-effectiveness estimates for the within-trial period of 17,700 sterling pound per life-year gained (6900 sterling pound to infinity) and 9500 sterling pound per QALY gained (CI 4300-26,500 sterling pound) were generated that include uncertainty due to the imputation process. An alternative imputation approach did not materially affect these estimates. CONCLUSIONS: Previous analyses of the ISOLDE study showed significant improvement on disease-specific health status measures and a trend toward a survival advantage for treatment with FP. This analysis shows that joint considerations of quality of life and survival result in a substantial increase in QALYs favoring treatment with FP. Based on these data, the inhaled corticosteroid FP appears cost-effective for the treatment of COPD. Confirmation or refutation of this result may be achieved once the Towards a Revolution in COPD Health (TORCH) study reports, a large randomized controlled trial powered to detect mortality changes associated with the use of FP alone, or in combination with salmeterol, which is also collecting resource use and utility data suitable for estimating cost-effectiveness.

Administration, Inhalation↗

Risk taking and tolerance of uncertainty: implications for surgeons.

BACKGROUND: Adherence to evidence-based adverse outcome prevention techniques is a critical factor in providing high-quality patient care, but many of these interventions are not used by physicians. It is unclear if surgeons' risk attitudes and reactions to uncertainty influence their use of these or other interventions. MATERIALS AND METHODS: A systematic review of the literature was conducted to identify studies evaluating the effects of physicians' risk attitudes, reactions to uncertainty or ambiguity, and personality traits on clinical decision making. RESULTS: A variety of instruments to assess risk attitude and reactions to uncertainty have been developed and tested among physicians involved in critical care and emergency medicine. Scoring systems distinguish risk averse and risk seeking practitioners. In many studies, these characteristics were related to clinical decision making in situations of uncertainty. For example, among patients evaluated in the emergency room for chest pain, "risk-seeking" physicians admitted significantly fewer patients who did not have acute myocardial infarction than risk-avoiding physicians (29% and 47% of patients admitted, respectively). In contrast, risk-seeking physicians were no more likely to discharge a patient who eventually was found to have an acute myocardial infarction. CONCLUSIONS: There are very limited data on the extent to which surgical decision making is linked to risk taking behavior and "comfort with uncertainty". Understanding the behaviors, attitudes and beliefs that make up surgical "judgment" remains a challenge for those interested in influencing behavior.

Attitude of Health Personnel↗

Barriers to Australian physicians' and paediatricians' involvement in randomised controlled trials.

OBJECTIVE: To compare attitudes of Australian physicians and paediatricians about treatment and randomised controlled trial (RCT) participation. DESIGN AND PARTICIPANTS: A cross-sectional survey using the validated "Physician Orientation Profile" (POP), with 250 physicians and 250 paediatricians surveyed. OUTCOME MEASURES: Five indices - primary allegiance, decision making under uncertainty, professional activities, perceived rewards, and peer-group influence - with scores for each participant ranging along a continuum from clinician-oriented to research-oriented and expressed as a number between 0 and 1. RESULTS: Overall response rate was 60%, with 135 physicians (54%) and 165 paediatricians (66%) responding. Paediatricians and physicians were similar in their attitudes to RCT participation, being generally clinician-oriented rather than research-oriented and less inclined to participate in RCTs when there is uncertainty about the best treatment. Most assign limited time to research, with 26.9% not currently involved in research and 31.5% having no experience of RCT participation. Doctors perceive few rewards and little peer-group influence regarding trial participation. Independent predictors of favourable attitudes to trial participation (based on POP scores) were the presence of allocated research time (0.37 for no allocated research time v 0.61 for > 70% research time; P < 0.0001), previous experience enrolling a patient in an RCT (0.40 for no experience v 0.46 for experience; P < 0.0001), and articles published in the past 12 months (0.40 for no publications v 0.55 for > 3 publications; P < 0.0001). CONCLUSIONS: This study highlights the minor importance of research for most Australian physicians. Research plays only a small role in their professional activities, and the importance of research participation is not recognised. They are clinician-oriented in their attitudes to RCT participation. To encourage greater involvement in trials among physicians in Australia, clinical research needs to be restructured in a primarily clinically oriented setting with dedicated research time.

Adult↗

Health-related quality of life in patients with glioblastoma: a randomised controlled trial.

BACKGROUND: A randomised controlled trial of radiotherapy alone versus radiotherapy with concomitant and adjuvant temozolomide for patients with glioblastoma showed that survival was higher for patients assigned combination treatment compared with those assigned standard radiotherapy alone. This paper reports the health-related quality of life (HRQOL) of the patients in this trial. METHODS: 573 patients with newly diagnosed glioblastoma were randomly allocated either radiotherapy alone or radiotherapy and temozolomide. The primary endpoint was survival, and HRQOL was a secondary endpoint. We assessed HRQOL at baseline and at every 3 months during treatment until progression using the European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaire core-30 (QLQ-C30) and the EORTC brain cancer module (EORTC BN-20). We calculated changes from baseline score for seven predefined HRQOL measures (fatigue, overall health, social function, emotional function, future uncertainty, insomnia, and communication deficit) and differences between groups for these measures at every time point. The significance of, and proportions of patients with, improved HRQOL scores--defined as a change of 10 points or more--were recorded. This trial is registered on the US National Cancer Institute website http://www.cancer.gov/search/NewClinicalTrials, NCT00006353. FINDINGS: Baseline questionnaires were available for 490 (86%) patients. Baseline HRQOL scores did not differ between groups. At first follow-up, groups differed only in social functioning, favouring the radiotherapy-only group (mean score 79.0 [SD 3.2] for patients assigned radiotherapy vs 67.4 [2.7] for those assigned radiotherapy and temozolomide; difference between groups 11.6 points [95% CI 3.5-19.7], p=0.0052). Over subsequent assessments, HRQOL was much the same between treatment groups. INTERPRETATION: Addition of temozolomide during and after radiotherapy for patients with newly diagnosed glioblastoma significantly improved survival without a negative effect on HRQOL.

Activities of Daily Living↗

Intravenous immunoglobulin for chronic inflammatory demyelinating polyradiculoneuropathy.

BACKGROUND: Chronic inflammatory demyelinating polyradiculoneuropathy is an immune mediated disorder characterised by progressive or relapsing symmetrical motor or sensory symptoms and signs in more than one limb, developing over at least two months. It may cause prolonged periods of disability and even death. Several uncontrolled studies have suggested a beneficial effect of intravenous immunoglobulin. OBJECTIVES: To review systematically the evidence from randomised controlled trials concerning the efficacy and safety of intravenous immunoglobulin in chronic inflammatory demyelinating polyradiculoneuropathy. SEARCH STRATEGY: We used the Search Strategy of the Cochrane Neuromuscular Disease Review Group to search the Disease Group register and other databases for randomised controlled trials from 1985 onwards. SELECTION CRITERIA: Randomised controlled studies examining the effects of any dose of intravenous immunoglobulin versus placebo, plasma exchange or corticosteroids in patients with definite or probable chronic inflammatory demyelinating polyradiculoneuropathy. Outcome measures had to include one of the following: a disability score, the Medical Research Council sum score, electrophysiological data or walking distance. Studies which reported the frequency of adverse effects were used to assess the safety of treatment. DATA COLLECTION AND ANALYSIS: Two reviewers independently reviewed literature searches to identify potentially relevant trials, scored their quality and extracted data independently. For dichotomous data, we calculated relative risks, and for continuous data, effect sizes (for definition see statistical analysis section) and weighted pooled effect sizes. Statistical uncertainty was expressed in 95% confidence intervals. Sensitivity analysis excluding studies with quality scores below A 0.50 and below B 0.75 was planned but not performed as all studies had quality scores above 0.75. MAIN RESULTS: Six randomised controlled trials were considered eligible including 170 patients. Four studies on 113 patients compared intravenous immunoglobulin against placebo. One trial with 17 patients compared intravenous immunoglobulin with plasma exchange in a cross-over design and one trial compared intravenous immunoglobulin with prednisolone in 32 patients. A significantly higher proportion of patients improved in disability within one month after the onset of intravenous immunoglobulin treatment as compared with placebo (relative risk 3.17, 95% confidence interval 1.74 to 5.75). Whether all these improvements are equally clinically relevant cannot be deduced from this analysis because each trial used a different disability scale with a unique definition of a significant improvement. To overcome this problem an attempt was made to transform the various disability scales to the modified Rankin score. In three trials including 87 patients this transformation could be carried out. A significantly higher proportion of patients improved one point after intravenous immunoglobulin treatment compared to placebo (relative risk 2.47, 95% confidence interval 1.02 to 6.01). The effect size for change of mean disability score at six weeks comparing intravenous immunoglobulin with plasma exchange revealed no difference between the two therapies (effect size -0.07, 95% confidence interval -0.76 to 0.63.) The proportion of patients with a significant improvement did not differ significantly between prednisolone and intravenous immunoglobulin (relative risk of 0.91 (95% CI 0.50 to 1.68). Also, no difference in mean improvement on the disability scale was found at two weeks (effect size -0.12, 95% confidence interval -0.68 to 0.45) or six weeks (effect size -0.07, 95% confidence interval -0.63 to 0.50) between prednisolone and intravenous immunoglobulin. There were no statistically significant differences in frequencies of side effects between the three types of treatment. REVIEWER'S CONCLUSIONS: The evidence from randomised controlled trials shows that intravenous immunoglobulin improves disability for at least two to six weeks compared with placebo, with a number needed to treat of three. During this period it has similar efficacy to plasma exchange and oral prednisolone. Since intravenous immunoglobulin, plasma exchange and prednisolone seem to be equally effective, it is currently uncertain which of these treatments should be the first choice. Cost, side effects, duration of treatment, dependency on regular hospital visits and ease of administration all have to be considered before such a decision can be made.

Humans↗

How children and adults produce and perceive uncertainty in audiovisual speech.

We describe two experiments on signaling and detecting uncertainty in audiovisual speech by adults and children. In the first study, utterances from adult speakers and child speakers (aged 7-8) were elicited and annotated with a set of six audiovisual features. It was found that when adult speakers were uncertain they were more likely to produce fillers, delays, high intonation, eyebrow movements, and "funny faces." The basic picture for the child speakers was somewhat similar, in that the presence of certain audiovisual cues correlated with uncertainty, but the differences were relatively small and less often significant. In the second study both adult and child judges watched responses from adult and child speakers selected from the first study to find out whether they were able to correctly estimate a speakers' level of uncertainty. It was found that both child and adult judges gave more accurate scores for answers from adult speakers than from child speakers and that child judges overall provided less accurate scores than adult judges.

Adult↗

Improving the reliability of polygenic risk score-based prediction for cardiovascular and renal complications across ancestries in type 2 diabetes using Mondrian Cross-Conformal Prediction.

Polygenic risk scores (PRS) developed in European populations often show reduced predictive performance in non-European populations, limiting their clinical utility. This lack of transferability across ancestries remains a major challenge in genomic medicine and raises concerns about health equity. We aimed to evaluate whether uncertainty-aware prediction, implemented through Mondrian Cross-Conformal Prediction, improves the performance and reliability of polygenic risk score-based predictions across ancestries for nephropathy, stroke, and myocardial infarction in individuals with type 2 diabetes in a multi-ethnic cohort. We leveraged Mondrian Cross-Conformal Prediction (MCCP), an uncertainty quantification framework, combined with logistic regression applied to a multi-polygenic risk score (multiPRS) to predict the risk of nephropathy, stroke, and myocardial infarction in individuals with type 2 diabetes. Two training frameworks were evaluated: one using 4,098 individuals with type 2 diabetes of European ancestry from the ADVANCE trial for training and 17,574 White British, 1,145 South Asian, and 749 African UK Biobank participants for testing; and another using the 17,574 White British UK Biobank participants for training and the South Asian and African participants for testing. Logistic regression provided robust baseline performance across populations. On top of this baseline, MCCP did not improve performance but added capabilities absent from probability-based stratification: for each individual, it issued a prediction together with an explicit confidence and credibility level; it allowed a tolerated error level to be set in advance and delivered prediction sets respecting it in the majority of settings; and it flagged individuals for whom no reliable prediction could be made. Applying MCCP to PRS-based prediction thus enables uncertainty-aware risk stratification and improves the reliability of risk prediction across ancestries, providing a more equitable framework for clinical use.

Female↗

Measuring the complexity and uncertainty of surgery and postsurgical care.

This article reports the results of a survey of a nationwide sample of more than 900 surgeons and post-surgical nurses, who were asked to rate the relative complexity and uncertainty of 71 surgical procedures frequently performed in hospitals. Average scores assigned to each surgical procedure by both types of raters are reported and the extent of agreement is assessed across indicator questions and types of raters. A surprisingly high level of agreement was observed. Explanations for the extent of agreement are discussed and uses for these scores are described.

Attitude of Health Personnel↗

Dairy products and the risk of prostatic cancer.

Dietary indicators of prostatic cancer risk were analyzed in a case-control study conducted in Northern Italy on 96 histologically confirmed cases and 292 controls in hospital for acute, nonneoplastic or genital tract diseases. There was a significant trend in risk as regards frequency of milk consumption: compared with nondrinkers or occasional milk drinkers, the relative risk (RR) was 1.2 (95% confidence interval, Cl, 0.7-1.9) for 1 or 2 glasses per day and 5.0 (95% Cl 1.5-16.6) for 2 or more glasses per day. By contrast, no consistent association was observed with measures of cheese or butter intake. This might, at least in part, be attributable to the lower measurement errors for milk (which tends to be consumed in regular and uniform patterns) as compared with other dairy products. However, the interpretation of these findings is not clear, since other sources of animal fat, like eggs or meat, as well as a summary fat score, were unrelated to prostatic cancer. Although these limitations and uncertainties are substantial, this study provides further evidence that elevated milk consumption may be an indicator of prostatic cancer risk.

Aged↗

Emotional distress reported by women and husbands prior to a breast biopsy.

The purpose of this study was to describe the emotional distress of women (N = 300) and husbands (N = 265) prior to the women's breast biopsy and to identify factors related to their levels of distress. Standardized instruments were used to measure social support, uncertainty, marital satisfaction, family functioning, concurrent stress, hopelessness, and emotional distress. Women reported moderately high levels of emotional distress and significantly more distress than their husbands. Forty-two percent of the variance in women's distress scores and 42% of the variance in husbands' distress scores were accounted for by the independent variables. Concurrent stress, lower education, hopelessness, and uncertainty explained the most variance in women's distress, while concurrent stress, hopelessness, and family functioning explained the most variance in husbands' distress.

Adult↗

Quality of life in patients with various Barrett's esophagus associated health states.

BACKGROUND: The management of Barrett's esophagus (BE), particularly high grade dysplasia (HGD), is an area of much debate and controversy. Surgical esophagectomy, intensive endoscopic surveillance and mucosal ablative techniques, especially photodynamic therapy (PDT), have been proposed as possible management strategies. The purpose of this study was to determine the health related quality of life associated with Barrett's esophagus and many of the pivotal health states associated with Barrett's HGD management. METHODS: 20 patients with Barrett's esophagus were enrolled in a pilot survey study at a large urban hospital. The utility of Barrett's esophagus without dysplasia (current health state) as well as various health states associated with HGD management (hypothetical states as the subject did not have HGD) were measured using a validated health utility instrument (Paper Standard Gamble). These specific health states were chosen for the study because they are considered pivotal in Barrett's HGD decision making. Information regarding Barrett's HGD was presented to the subject in a standardized format that was designed to be easily comprehendible. RESULTS: The average utility scores (0-1 with 0 = death and 1 = perfect health) for the various Barrett's esophagus associated states were: BE without dysplasia-0.95; Post-esophagectomy for HGD with dysphagia-0.92; Post-PDT for HGD with recurrence uncertainty-0.93; Post-PDT for HGD with recurrence uncertainty and dysphagia-0.91; Intensive endoscopic surveillance for HGD-0.90. CONCLUSION: We present the scores for utilities associated with Barrett's esophagus as well as various states associated with the management of HGD. The results of our study may be useful in advising patients and providers regarding expected outcomes of the various HGD management strategies as well as providing utility scores for future cost-effectiveness analyses.

Aged↗