Women's preferences concerning IVF treatment: a discrete choice experiment with particular focus on embryo transfer policy.

STUDY QUESTION: What outcomes are important for women to decide on the day of embryo transfer (ET) in IVF? SUMMARY ANSWER: The highest cumulative live birth rate (cLBR) per treatment was the most important treatment outcome for women undergoing an IVF treatment, regardless of the number of transfers needed until pregnancy and impact on quality of life. WHAT IS KNOWN ALREADY: Cleavage stage (Day 3) and blastocyst stage (Day 5) ETs are common transfer policies in IVF. The choice for one or the other day of ET differs between clinics. From the literature, it remains unclear whether the day of transfer impacts the cLBR. Patient preferences for the day of ET have not been examined yet. STUDY DESIGN SIZE AND DURATION: A discrete choice experiment (DCE) was performed to investigate female patients' preferences and their values concerning various aspects of an IVF treatment, with a particular focus on ET policy. A multicenter DCE was conducted between May 2020 and June 2020 in which participants were asked to choose between different treatments. Each treatment was presented using hypothetical scenarios containing the following attributes: the probability of a healthy live birth per IVF treatment cycle, the number of embryos available for transfer (for fresh and frozen-thawed ET), the number of ETs until pregnancy and the impact of the treatment on the quality of life. PARTICIPANTS/MATERIALS SETTING METHODS: Women (n = 445) were asked to participate in the DCE at the start of an IVF treatment cycle in 10 Dutch fertility clinics. Participating women received an online questionnaire. The attributes' relative importance was analyzed using logistic regression analyses. MAIN RESULTS AND THE ROLE OF CHANCE: A total of 164 women participated. The most important attribute chosen was the cLBR. The total number of embryos suitable for transfer also influenced women's treatment preferences. Neither the number of transfers needed until pregnancy, nor the impact on quality of life influenced the treatment preferences in the aggregated data. For women in the older age group (age ≥36 years) and the multipara subgroup, the impact on quality of life was more relevant. Naive patients (patients with no prior experience with IVF treatment) assigned less value to the number of ETs needed until pregnancy and assigned more value to the cLBR than the patients who had experienced IVF. LIMITATIONS REASONS FOR CAUTION: An important limitation of a DCE study is that not all attributes can be included, which might be relevant for making choices. Patients might make other choices in real life as the DCE scenarios presented here are hypothetical and might not exactly represent their personal situation. We tried to avoid potential bias by selecting the attributes that mattered most to the patients obtained through patient focus groups. The final selection of attributes and the assigned levels were established using the input of an expert panel of professionals and by performing a pilot study to test the validity of our questionnaire. Furthermore, because we only included women in our study, we cannot draw any conclusions on preferences for partners. WIDER IMPLICATIONS OF THE FINDINGS: The results of this study may help fertility patients, clinicians, researchers and policymakers to prioritize the most important attributes in the choice for the day of ET. The present study shows that cLBR per IVF treatment is the most important outcome for women. However, currently, there is insufficient information in the literature to conclude which day of transfer is more effective regarding the cLBR. Randomized controlled trials on the subject of Day 3 versus Day 5 ETs and cLBR are needed to allow evidence-based counseling. STUDY FUNDING/COMPETING INTERESTS: This work received no specific funding and there are no conflicts of interest. TRIAL REGISTRATION NUMBER: N/A.

Patient-assigned health utility values for controlled and uncontrolled pemphigus vulgaris and foliaceus.

BACKGROUND: The assessment of health-related quality of life (HRQoL) in patients with pemphigus is now of increasing interest due to the availability of highly effective new therapies. Preference-based HRQoL values or health utilities required for medical and financial decision-making are not yet available directly from pemphigus patients. OBJECTIVE: To obtain health utility values for current health and hypothetical health states from the perspective of pemphigus patients. METHODS: A cross-sectional questionnaire survey was carried out with pemphigus patients. Disease severity was rated by Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Patients were asked to evaluate their current health as well as three common hypothetical pemphigus health states [uncontrolled pemphigus vulgaris (PV), uncontrolled pemphigus foliaceus (PF) and controlled PV/PF] by using composite time trade-off (cTTO). Multiple regression was applied to explore determinants of utility values. RESULTS: Responses of 108 patients (64.8% women, mean age 57.4 years) were analysed. Mean ABSIS score was 11.6. The mean utility values for the hypothetical uncontrolled PV, uncontrolled PF and controlled PV/PF health states were 0.41, 0.52 and 0.66 with cTTO. The mean cTTO scores for current health were higher compared with the hypothetical health states (0.76; P < 0.001). Patients with higher ABSIS, worse pain intensity scores and those having a caregiver reported lower utility values for current health (P < 0.05). CONCLUSIONS: In pemphigus, HRQoL impairment expressed in utility values seems to be considerable, especially in comparison with other chronic dermatological conditions (e.g. psoriasis, atopic eczema, chronic hand eczema). These health utilities inform physicians, policymakers and funders about the overall extent of health loss in pemphigus and provide evidence to guide medical decisions and cost-effectiveness analyses of treatment strategies. Future research is needed to evaluate the caregiver burden in pemphigus.

Valuation of pemphigus vulgaris and pemphigus foliaceus health states: a convenience sample experiment.

BACKGROUND: Health-related quality of life (HRQoL) in pemphigus has been widely investigated; nevertheless, utility values for economic evaluations are still lacking. OBJECTIVES: To estimate health utilities for hypothetical pemphigus vulgaris (PV) and pemphigus foliaceus (PF) health states in a general population sample. METHODS: Three health states (uncontrolled PV, uncontrolled PF and controlled pemphigus) were developed based on a systematic literature review of HRQoL studies in pemphigus. Utilities were obtained from a convenience sample of 108 adults using a visual analogue scale (VAS) and 10-year time trade-off (TTO). Lead-time TTO was applied for health states regarded as worse than dead with a lead time to disease time ratio of 1 : 1. RESULTS: The mean VAS utility scores for PV, PF and controlled pemphigus were 0·25 ± 0·15, 0·37 ± 0·17 and 0·63 ± 0·16, respectively. Corresponding TTO utilities were as follows: 0·34 ± 0·38, 0·51 ± 0·32 and 0·75 ± 0·31. Overall, 14% and 6% judged PV and PF as being worse than dead. For both VAS and TTO values, significant differences were observed between all health states (P < 0·001). VAS utilities were rated significantly lower compared with TTO in each health state (P < 0·001). CONCLUSIONS: This is the first study that reports health utility values for PV and PF. Successful treatment of pemphigus might result in significant utility gain (0·24-0·41). These empirical findings with respect to three health states in pemphigus may serve as anchor points for further utility studies and cost-effectiveness analyses.

The better than dead method: feasibility and interpretation of a valuation study.

BACKGROUND: Traditionally, the valuation of health states worse than being dead suffers from two problems: [1] the use of different elicitation methods for positive and negative values, necessitating arbitrary transformations to map negative to positive values; and [2] the inability to quantify that values are time dependent. The Better than Dead (BTD) method is a health-state valuation method where states with a certain duration are compared with being dead. It has the potential to overcome these problems. OBJECTIVES: To test the feasibility of the BTD method to estimate values for the EQ-5D system. METHODS: A representative sample of 291 Dutch respondents (aged 18-45 years) was recruited. In a web-based questionnaire, preferences were elicited for a selection of 50 different health states with six durations between 1 and 40 years. Random-effects models were used to estimate the effects of socio-demographic and experimental variables, and to estimate values for the EQ-5D. Test-retest reliability was assessed in 41 respondents. RESULTS: Important determinants for BTD were a religious life stance [odds ratio 4.09 (2.00-8.36)] and the educational level. The fastest respondents more often preferred health-state scenarios to being dead and had lower test-retest reliability (0.45 versus 0.77 and 0.84 for fast, medium and slow response times, respectively). The results showed a small number of so-called maximal endurable time states. CONCLUSION: Valuating health states using the BTD method is feasible and reliable. Further research should explore how the experimental setting modifies how values depend on time.

Quality of life after prostate cancer treatments in patients comparable at baseline.

BACKGROUND: Previous studies on the effects of different prostate cancer treatments on quality of life, were confounded because patients were not comparable. This study examined treatment effects in more comparable groups. METHODS: From 2008-2011, 240 patients with localised prostate cancer were selected to be eligible for both radical prostatectomy (RP) and external beam radiotherapy (EBRT). Brachytherapy (BT) was a third option for some. Health-related quality of life was measured by expanded prostate cancer index composite (EPIC) up to 12 months after treatment. RESULTS: In the sexual domain, RP led to worse summary scores (P<0.001) and more often to a clinically relevant deterioration from baseline than BT and EBRT (79%, 33%, 34%, respectively). In the urinary domain, RP also led to worse summary scores (P=0.014), and more deterioration from baseline (41%, 12%, 19%, respectively). Only on the irritative/obstructive urinary scale, more BT patients (40%) showed a relevant deterioration than RP (17%) and EBRT patients (11%). In the bowel domain, the treatment effects did not differ. CONCLUSION: This study provides a more unbiased comparison of treatment effects, as men were more comparable at baseline. Our results suggest that, for quality of life, radiotherapy is as least as good an option as RP for treating localised prostate cancer.

TIPP and Lichtenstein modalities for inguinal hernia repair: a cost minimisation analysis alongside a randomised trial.

The transinguinal preperitoneal (TIPP) technique using a soft mesh with a memory ring was developed recently for inguinal hernia repair. To compare TIPP with the Lichtenstein method, a randomised trial was conducted (ISRCTN93798494). The aim of this study was to perform an economic evaluation of the TIPP modality compared to the Lichtenstein modality from both a hospital and societal perspective alongside the clinical trial. The TULIP study was a double-blind randomised clinical trial comparing two techniques for inguinal hernia repair (TIPP and Lichtenstein). Correct generation of the allocation sequence, allocation concealment, blinding, and follow-up were used/applied according to the recommendations of the Cochrane Handbook. Next to the cost drivers, the short-form-36 health survey (SF-36) data from the TULIP trial was used to determine utility. The SF-36 data from the TULIP trial were revised using the SF-6D algorithm according to Brazier. Two scenarios-a hospital and a societal perspective-were presented. If the analyses showed no difference in effects (on the SF-6D) the cost effectiveness decision rule to cost minimisation was altered. No significant difference in SF-6D utility between both modalities was found (mean difference: 0.888, 95% CI -1.02 to 1.23); consequently, the economic decision rule became cost minimisation. For the hospital perspective no significant differences in costs were found (mean difference: euro -13, 95% CI euro -130 to euro 104). However, when including productivity gains in the analysis, significant differences (P = 0.037) in costs favouring the TIPP modality (mean saving: euro 1,472, 95% CI euro 463- euro 2,714) were found. The results show that TIPP is a cost-saving inguinal hernia repair technique compared to the Lichtenstein modality against equal effectiveness expressed as quality adjusted life week at 1 year given a societal perspective. In the trial, TIPP patients showed on average a quicker recovery of 6.5 days compared to Lichtenstein patients.

Maximal endurable time states and the standard gamble: more preference reversals.

BACKGROUND: The time trade off (TTO) method is not sensitive to maximal endurable time preferences, as preference reversals occur. The standard gamble (SG) method has not been tested regarding its sensitivity to maximal endurable time preferences. OBJECTIVE: This study investigates whether preference reversals occur for the SG method as well. METHODS: Fifty-nine respondents stated for several migraine health states their preference for living 10 or 20 years in that state. A migraine state was selected for which a respondent preferred 10-20 years, a maximal endurable time preference. Two probability equivalent gambles were obtained for the migraine states lasting 10 and 20 years, respectively. Preference reversals occurred when the gamble, equivalent to the longer duration, was preferred to the gamble equivalent to the shorter duration. RESULTS: Out of 59 respondents, 48 had maximal endurable time preferences. Of these 48 respondents, 34 (71%) showed a preference reversal. This percentage differed significantly from chance, that is 50% (P = 0.004), indicating that preference reversals occurred reliably. CONCLUSION: The observed reversal rate for the standard gamble is similar to rates observed previously with the TTO method. Utility measurement of poor health states is problematic, both with the TTO and standard gamble methods.

Perceived barriers to elective single embryo transfer among IVF professionals: a national survey.

BACKGROUND: After initial years of improvement, the multiple pregnancy rate after in vitro fertilization (IVF) in Europe now remains stable at 23% with single embryo transfer (SET) constituting 19% of all IVF cycles. Although elective SET prevents multiple pregnancies after IVF, couples and professionals apparently often decide to transfer more embryos. Previous qualitative research has identified factors that impede the use of elective SET. The aim of this study was to quantify those barriers among IVF professionals and to identify predictors of professionals' willingness to perform elective SET. METHODS: A national survey among all Dutch IVF professionals quantified the barriers suggested by a previous qualitative study and assessed characteristics of the professionals and clinics. Multivariate analysis identified predictors related to the willingness of IVF professionals to perform elective SET. RESULTS: In total, 107 professionals participated. The most frequently mentioned barriers to elective SET use were suboptimal success rates associated with cryopreservation (96%), not seeing twin pregnancies as a complication (79%) and lack of a SET protocol (78%). Two variables seem to predict the professionals' willingness to perform elective SET: university hospital of the initial fertility training (P< 0.01) and high scores of perceived barriers, e.g. professionals' attitudes and skills (P < 0.01). The explained variance of these two variables was 25%. CONCLUSIONS: This study has identified the main barriers to elective SET use and predictors for willingness of professionals to perform elective SET. This insight into the decision-making process could be critical in terms of increasing the use of elective SET.

The Dutch tariff: results and arguments for an effective design for national EQ-5D valuation studies.

The objective of this study was to estimate a Dutch EQ-5D tariff and to determine in a simulation study using the dataset of the original UK valuation study, the number of health states and respondents needed to estimate a reliable tariff. In all, 300 Dutch respondents directly valued 17 states compared to 3000 respondents and 42 states in the original MVH protocol. The results reaffirmed differences in health-related preferences between countries, justifying the estimation of national tariffs. The mean absolute error was 0.030. The design of this study is recommended for national EQ-5D valuation studies.

[Measuring the quality of life in economic evaluations: the Dutch EQ-5D tariff]. / Kwaliteit van leven meten in economische evaluaties: het Nederlands EQ-5D-tarief.

OBJECTIVE: To value EQ-5D health states by a general Dutch public. EQ-5D is a standardised questionnaire that is used to calculate quality-adjusted life-years for cost-utility analysis. DESIGN: Descriptive. METHOD: A sample of 309 Dutch adults from Rotterdam and surroundings was asked to value 17 EQ-5D health states using the time trade-off method. Regression analysis was applied to the valuations of these 17 health states. By means of the estimated regression coefficients, which together constitute the so-called Dutch tariff, valuations can be determined for all possible EQ-5D health states. These values reflect the relative desirability of health states on a scale where 1 refers to full health and 0 refers to death. Societal valuations are necessary in order to correct life-years for the quality of life. RESULTS: Complete data were obtained from 298 persons. Theywere representative for the Dutch population as far as age, gender and subjective health were concerned, but had a somewhat higher educational level. The estimated Dutch EQ-5D tariff revealed that the respondents assigned the most weight to (preventing) pain and anxiety or depression, followed by mobility, self-care and the activities of daily living. The Dutch tariff differed from the UK ('Measurement and Valuation of Health') tariff, which is currently used in Dutch cost-utility analyses. Compared to UK respondents, Dutch respondents assigned more weight to anxiety and depression and less weight to the other dimensions. Conclusion. The valuation of health states by this representative Dutch study group differed from the valuation that is currently used in Dutch cost-utility analyses.

Do patients' preferences predict smoking cessation?

BACKGROUND: Social cognitive theories (e.g., ASE-model) propose that smoking cessation can be accomplished by changing underlying cognitive determinants such as attitudes, social influence, and self-efficacy. Others have argued that people's preferences for a health state can also predict behavior. In this study, preferences constitute the degree to which one is willing to give up a valuable good, that is survival, to obtain a desirable behavior (e.g., to quit smoking). The aim of this study is to investigate the impact of cognitive determinants and patients' preferences on the prediction of smoking cessation. METHODS: Data were collected as part of a randomized clinical trial. Smoking outpatients (N = 217) with cardiovascular disease were included. At baseline (T0), socio-demographic and clinical characteristics were measured. Social cognitions (pros of quitting, pros of smoking, social influence, and self-efficacy) and preferences (using a paper time trade-off measure (TTO)) were assessed at T1 (1 week). Smoking cessation was assessed at T2 (8 weeks). RESULTS: Logistic regression analysis showed that socio-demographic (P = .92) and clinical (P = .26) factors did not predict smoking cessation, whereas social cognitions (P = .02) and preferences did (P = .00). On average, quitters are willing to give up an appreciable amount of survival years in order to quit smoking. CONCLUSION: Preference for quitting was the strongest single predictor of smoking cessation.

Quality of life after transhiatal compared with extended transthoracic resection for adenocarcinoma of the esophagus.

PURPOSE: To assess 3 years of quality of life in patients with esophageal cancer in a randomized trial comparing limited transhiatal resection with extended transthoracic resection. PATIENTS AND METHODS: Quality-of-life questionnaires were sent at baseline and at 5 weeks; 3, 6, 9, and 12 months; and 1.5, 2, 2.5, and 3 years after surgery. Physical and psychological symptoms, activity level, and global quality of life were assessed with the disease-specific Rotterdam Symptom Checklist. Generic quality of life was measured with the Medical Outcomes Study Short Form-20. RESULTS: A total of 199 patients participated. Physical symptoms and activity level declined after the operation and gradually returned toward baseline within the first year (P < .01). Psychological well-being consistently improved after baseline (P < .01), whereas global quality of life showed a small initial decline followed by continuous gradual improvement (P < .01). Quality of life stabilized in the second and third year. Three months after the operation, patients in the transhiatal esophagectomy group (n = 96) reported fewer physical symptoms (P = .01) and better activity levels (P < .01) than patients in the transthoracic group (n = 103), but no differences were found at any other measurement point. For psychological symptoms and global quality of life, no differences were found at any follow-up measurement. A similar pattern was found for generic quality of life. CONCLUSION: No lasting differences in quality of life of patients who underwent either transhiatal or transthoracic resection were found. Compared with baseline, quality of life declined after the operation but was restored within a year in both groups.

Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers.

PURPOSE: To evaluate a shared decision-making intervention (SDMI) for BRCA1/2 mutation carriers who have to make a choice between screening and prophylactic surgery for breasts and/or ovaries. PATIENTS AND METHODS: The SDMI consisted of two value assessment sessions, using the time trade-off method, followed by individualized treatment information based on (quality-adjusted) life expectancy. After the baseline assessment (2 weeks after a positive DNA test result), women were randomly assigned to the SDMI group (n = 44), receiving the SDMI 2 months after the test result, or to the control group (n = 44). The short- and long-term effects, 3 and 9 months after the test result, were assessed using questionnaires. Data were collected on well-being, treatment choice, and decision-related outcomes. RESULTS: In the short term, the SDMI had no effect. In the long term, with respect to well-being, patients in the SDMI group had less intrusive thoughts (P =.05) and better general health (P =.01) and tended to be less depressed (P =.07). With respect to decision-related outcomes for the breasts, the SDMI group held stronger preferences (P =.02) and agreed more strongly to having weighed the pros and cons (P =.01). No effect was found on treatment choice. In the long term, interaction effects between the SDMI and cancer history were found. The SDMI showed an overall beneficial effect for unaffected women, whereas affected women tended to experience detrimental effects. CONCLUSION: We conclude that the SDMI improved decision making in unaffected BRCA1/2 mutation carriers. Supporting decision making in a systematic way using trade-offs is beneficial for these women.

Is a single-item visual analogue scale as valid, reliable and responsive as multi-item scales in measuring quality of life?

PURPOSE: To compare the validity, reliability and responsiveness of a single, global quality of life question to multi-item scales. METHOD: Data were obtained from 83 consecutive patients with oesophageal adenocarcinoma undergoing either transhiatal or transthoracic oesophagectomy. Quality of life was measured at baseline, 5 weeks, 3 and 12 months post-operatively with a single-item Visual Analogue Scale (VAS) ranging from 0 to 100, the multi-item Medical Outcomes Study Short Form-20 (MOS SF-20) and Rotterdam Symptom Check-List (RSCL). Convergent and discriminant validity, test-retest reliability and both distribution-based and anchor-based responsiveness were evaluated. MAJOR FINDINGS: At baseline and at 5 weeks, the VAS showed high correlations with the MOS SF-20 health perceptions scale (r = 0.70 and 0.72) and moderate to high correlations with all other subscales of the MOS SF-20 and RSCL (r = 0.29-0.70). The test-retest reliability intra-class correlation for the VAS was 0.87. At 5 weeks post-operatively, the distribution-based responsiveness was moderate for the VAS (standardised response mean: -0.47; effect size: -0.56), high for the physical subscales of the MOS SF-20 and RSCL (-1.08 to -1.51) and low for the psychological subscales (0.11 to -0.25). Five weeks post-operatively, anchor-based responsiveness was highest for the VAS (r = 0.54). CONCLUSION: The VAS is an instrument with good validity, excellent reliability, moderate distribution-based responsiveness and good anchor-based responsiveness compared to multi-item questionnaires. Its use is recommended in clinical trials to assess global quality of life.

Impact of BRCA1/2 testing and disclosure of a positive test result on women affected and unaffected with breast or ovarian cancer.

To evaluate the impact of BRCA1/2 testing and disclosure of a positive test result on women affected and unaffected with cancer. Longitudinal cohort study including women affected and unaffected with breast or ovarian cancer testing for a BRCA1/2 mutation. Data on well-being (anxiety, depression, cancer related distress, general health), treatment choice, and decision making about cancer prevention were collected at baseline (1 week after blood sampling; affected n = 192, unaffected n = 176) and at follow-up (2 weeks after disclosure of a positive test result; affected n = 23, unaffected n = 66). Women affected and unaffected with breast or ovarian cancer were compared using univariate statistics. Change over time was examined using repeated measures analysis of variance. With respect to well-being, affected women scored worse at baseline. At follow-up, both affected and unaffected women experienced a decline in well-being, which tended to be stronger in affected women. Women diagnosed with cancer less than 1 year previously tended to report a worse well-being than those diagnosed longer ago. With respect to treatment choice, more affected women intended to obtain prophylactic surgery and valued it higher at both time points. With respect to decision making, affected women had a lower preference for participation in decision making at baseline; no differences were found at follow-up. At follow-up, both affected and unaffected women showed an increase in strength of treatment preference and a decrease in decision uncertainty. Disclosure of a positive test result had a negative impact on well-being. Affected women, especially those who have been recently diagnosed with cancer, experienced the worst well-being and could benefit from psychosocial support.

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation.

The aim of the study was to evaluate the impact of a decision aid (DA) and its timing in women being tested for a BRCA1/2 mutation. Women with and without a previous history of cancer were included after blood sampling for genetic testing. The DA consisted of a brochure and video providing information on screening and prophylactic surgery. To evaluate the impact of the DA, women were randomised to the DA group (n=184), receiving the DA 2 weeks after blood sampling, or to the control group (n=184). To evaluate the impact of timing, mutation carriers who had received the DA before the test result (n=47) were compared to mutation carriers who received the DA after the test result (n=42). Data were collected on well-being, treatment choice, decision and information related outcomes. The impact of the DA was measured 4 weeks after blood sampling. The impact of timing was measured 2 weeks after a positive test result. The DA had no impact on well-being. Regarding decision related outcomes, the DA group more frequently considered prophylactic surgery (P=0.02) corroborated with higher valuations (P=0.04). No differences were found for the other decision related outcomes. Regarding information related outcomes, the DA group felt better informed (P=0.00), was more satisfied with the information (P=0.00), and showed more accurate risk perceptions. Timing of the DA had no effect on any of the outcomes. No interactions were found between the DA and history of cancer. In conclusion, women being tested for a BRCA1/2 mutation benefit from the DA on information related outcomes. Because timing had no effect, the DA is considered useful either before or after the test result.

Palliative chemotherapy or best supportive care? A prospective study explaining patients' treatment preference and choice.

In palliative cancer treatment, the choice between palliative chemotherapy and best supportive care may be difficult. In the decision-making process, giving information as well as patients' values and preferences become important issues. Patients, however, may have a treatment preference before they even meet their medical oncologist. An insight into the patient's decision-making process can support clinicians having to inform their patients. Patients (n=207) with metastatic cancer, aged 18 years or older, able to speak Dutch, for whom palliative chemotherapy was a treatment option, were eligible for the study. We assessed the following before they consulted their medical oncologist: (1) socio-demographic characteristics, (2) disease-related variables, (3) quality-of-life indices, (4) attitudes and (5) preferences for treatment, information and participation in decision-making. The actual treatment decision, assessed after it had been made, was the main study outcome. Of 207 eligible patients, 140 patients (68%) participated in the study. At baseline, 68% preferred to undergo chemotherapy rather than wait watchfully. Eventually, 78% chose chemotherapy. Treatment preference (odds ratio (OR)=10.3, confidence interval (CI) 2.8-38.0) and a deferring style of decision-making (OR=4.9, CI 1.4-17.2) best predicted the actual treatment choice. Treatment preference (total explained variance=38.2%) was predicted, in turn, by patients' striving for length of life (29.5%), less striving for quality of life (6.1%) and experienced control over the cause of disease (2.6%). Patients' actual treatment choice was most strongly predicted by their preconsultation treatment preference. Since treatment preference is positively explained by striving for length of life, and negatively by striving for quality of life, it is questionable whether the purpose of palliative treatment is made clear. This, paradoxically, emphasises the need for further attention to the process of information giving and shared decision-making.

Transhiatal vs extended transthoracic resection in oesophageal carcinoma: patients' utilities and treatment preferences.

To assess patients' utilities for health state outcomes after transhiatal or transthoracic oesophagectomy for oesophageal cancer and to investigate the patients' treatment preferences for either procedure. The study group consisted of 48 patients who had undergone either transhiatal or transthoracic oesophagectomy. In an interview they were presented with eight possible health states following oesophagectomy. Visual Analogue Scale and standard gamble techniques were used to measure utilities. Treatment preference for either transhiatal or transthoracic oesophagectomy was assessed. Highest scores were found for the patients' own current health state (Visual Analogue Scale: 0.77; standard gamble: 0.97). Lowest scores were elicited for the health state "irresectable tumour" (Visual Analogue Scale: 0.13; standard gamble: 0.34). The Visual Analogue Scale method produced lower estimates (P<0.001) than the standard gamble method for all health states. Most patient characteristics and clinical factors did not correlate with the utilities. Ninety-five per cent of patients who underwent a transthoracic procedure and 52% of patients who underwent a transhiatal resection would prefer the transthoracic treatment. No significant associations between any patient characteristics or clinical characteristics and treatment preference were found. Utilities after transhiatal or transthoracic oesophagectomy were robust because they generally did not vary by patient or clinical characteristics. Overall, most patients preferred the transthoracic procedure.