In a Child's Shoes: Composite Time Trade-Off Valuations for EQ-5D-Y-3L with Different Proxy Perspectives.

BACKGROUND AND OBJECTIVES: EQ-5D-Y-3L health states are commonly valued by asking adults to complete stated preference tasks, 'given their views about a 10-year-old child' (hereafter referred to as proxy 1). The use of this perspective has been a source of debate. In this paper, we investigated an alternative proxy perspective: i.e. adults considered what they think a 10-year old-child would decide for itself (hereafter, proxy 2 (substitute)]. Our main objective was to explore how the outcomes, dispersion and response patterns of a composite time trade-off valuation differ between proxy 1 and proxy 2. METHODS: A team of four trained interviewers completed 402 composite time trade-off interviews following the EQ-5D-Y-3L protocol. Respondents were randomly allocated to value health states in either the proxy 1 or proxy 2 (substitute) perspective. Each respondent valued ten health states with the perspective they were assigned to, as well as one health state with the alternative perspective (33333). RESULTS: The use of different proxy perspectives yielded differences in EQ-5D-Y-3L valuation. For states in which children had considerable pain and were very worried, sad or unhappy, respondents' valuations were lower in proxy 1 than in proxy 2 (substitute) perspectives, by about 0.2. Within-subject variation across health states was lower for proxy 2 (substitute) than proxy 1 perspectives. Analyses of response patterns suggest that data for proxy 2 (substitute) perspectives were less clustered. CONCLUSIONS: There are systematic differences between composite time trade-off responses given by adults deciding for children and adults considering what children would want for themselves. In addition to warranting further qualitative exploration, such differences contribute to the ongoing normative discussion surrounding the source and perspective used for valuation of child and adolescent health.

Self-esteem in patients with venous thromboembolism predicts time trade-off values for own health.

BACKGROUND: The time trade-off (TTO) is a commonly used preference based method to assess health related values used in health economic analyses. Surprisingly little is known about the factors influencing the TTO. Since self-esteem is a predictor for health status measurements, and health status affects the TTO, we studied the relation between self-esteem and TTO values. METHODS: Data of 128 patients treated with vitamin K antagonists for venous thromboembolism on Short Form-36 (SF-36), Rosenberg self-esteem and patient characteristics were collected. TTO values were obtained for 'current health' and three chronic health states related to thrombosis, in face-to-face interviews with patients. Regression analyses were performed with the TTO as dependent variable. Analyses were performed in two groups; the complete sample, and traders only. Selected predictors were entered in four blocks: socio-demographic factors, medical-clinical factors, health status, and self-esteem. RESULTS: In the complete sample (N = 128), bivariate regression analysis showed that self-esteem explained 14% of the variance in TTO values for current health (p < .000, N = 117). In traders, multivariate regression analysis showed a significant relationship between self-esteem and TTO values for current health. Self-esteem increased the variance explained (R2) by 8.8%, from 28.1 to 36.9%, (p = 0.01; N = 57). For hypothetical health states, the effect of self-esteem was weaker and mostly absent after controlling for selected variables. CONCLUSIONS: In patients willing to trade-off time, higher self-esteem was associated with higher TTO values for own current health. Self-esteem explained an appreciable proportion of the variance in TTO values in traders. For hypothetical health states such associations were weak or absent.

Evaluating the conduct and application of health utility studies: a review of critical appraisal tools and reporting checklists.

BACKGROUND: Published health utility studies are increasingly cited in cost-utility analyses to inform reimbursement decision-making. However, there is limited guidance for investigators looking to systematically evaluate the methodological quality of health utility studies or their applicability to decision contexts. OBJECTIVE: To describe how health utility concepts are reflected in tools intended for use with the health economic literature, particularly with respect to the evaluation of methodological quality and context applicability. METHODS: We reviewed the critical appraisal and reporting tools described in a 2012 report published by the Agency for Healthcare Research and Quality (AHRQ), supplemented with a keyword search of MEDLINE and EMBASE, to identify existing tools which include health utility constructs. From these tools, a list of relevant items was compiled and grouped into domain categories based on the methodological or applicability aspect they were directed toward. RESULTS: Of the 24 tools we identified, 12 contained items relevant to the evaluation of health utilities. Sixty-five items were considered relevant to the evaluation of quality, while 44 were relevant to the evaluation of applicability. Items were arranged into four domains: health state descriptions; selection and description of respondents; elicitation and measurement methods; and other considerations. CONCLUSION: As key inputs to cost-utility analyses, health utilities have the potential to significantly impact estimates of cost-effectiveness. Existing tools contain only general items related to the conduct or use of health utility studies. There is a need to develop tools that systematically evaluate the methodological quality and applicability of health utility studies.

A Head-On Ordinal Comparison of the Composite Time Trade-Off and the Better-Than-Dead Method.

OBJECTIVES: The valuation of health states worse than dead is challenging. Currently used time trade-off methods face problems in (1) detecting time-dependent preferences and (2) insensitivity toward severity for states worse than dead. The better-than-dead (BTD) method has the potential to detect time-dependent preferences. This study compares the BTD and composite time trade-off (cTTO) methods at the ordinal level. METHODS: An experiment was conducted in a convenience sample in which respondents (N = 200) valued the same set of 7 health states in the BTD method and cTTO method. Binary BTD responses were used, with response categories of better than dead and worse than dead. Ternary cTTO responses were used, with the additional equal-to-dead response category. Polychoric correlations were used to determine the agreement between these methods. Consistency and test-retest reliability were assessed within methods. RESULTS: Overall agreement between the cTTO and BTD method equaled 77.1% and differed between health states and respondents. For both methods, there were few inconsistencies, and the test-retest reliability was comparable (88%). Health states were more often considered worse than dead in the BTD method (BTD: 54.7%, cTTO: 37.2%). CONCLUSIONS: The high agreement between both methods and the comparable amount of inconsistencies and test-retest reliability suggest that the methods have similar measurement properties. The BTD method yielded higher frequencies of worse-than-dead responses while essentially asking respondents to make similar choices. This accounts for part of the disagreement between the methods. Several explanations are offered for this difference, yet more research is needed to explain this phenomenon.

Introducing Decision Aids into Routine Prostate Cancer Care in The Netherlands: Implementation and Patient Evaluations from the Multi-regional JIPPA Initiative.

Uptake of decision aids (DAs) in daily routine is low, resulting in limited knowledge about successful DA implementation at a large scale. We assessed implementation rates after multi-regional implementation of three different prostate cancer (PCa) treatment DAs and patient-perceived barriers and facilitators to use a DA. Thirty-three hospitals implemented one out of the three DAs in routine care. Implementation rates for each DA were calculated per hospital. After deciding about PCa treatment, patients (n = 1033) completed a survey on pre-formulated barriers and facilitators to use a DA. Overall DA implementation was 40%. For each DA alike, implementation within hospitals varied from incidental (< 10% of eligible patients receiving a DA) to high rates of implementation (> 80%). All three DAs were evaluated positively by patients, although concise and paper DAs yielded higher satisfaction scores compared with an elaborate online DA. Patients were most satisfied when they received the DA within a week after diagnosis. Pre-formulated barriers to DA usage were experienced by less than 10% of the patients, and most patients confirmed the facilitators. Many patients received a DA during treatment counseling, although a wide variation in uptake across hospitals was observed for each DA. Most patients were satisfied with the DA they received. Sustained implementation of DAs in clinical routine requires further encouragement and attention.

Cultural Values: Can They Explain Differences in Health Utilities between Countries?

Introduction. Health utilities are widely used in health care. The distributions of utilities differ between countries; some countries more often report worse than dead health states, while mild states are valued more or less the same. We hypothesize that cultural values explain these country-related utility differences. Research Question. What is the effect of sociodemographic background, methodological factors, and cultural values on differences in health utilities? Methods and Analyses. Time tradeoff data from 28 EQ-5D valuation studies were analyzed, together with their sociodemographic variables. The dependent variable was Δu, the utility difference between mild and severe states. Country-specific cultural variables were taken from the World Values Survey. Multilevel models were used to analyze the effect of sociodemographic background, methodology (3L v. 5L), and cultural values on Δu. Intraclass correlation (ICC) for country variation was used to assess the impact of the predicting variables on the variation between countries. Results. Substantial variation in Δu was found between countries. Adding cultural values did not reduce ICCs for country variation. Sociodemographic background variables were only weakly associated with Δu and did not affect the ICC. Δu was 0.118 smaller for EQ-5D-5L studies. Discussion.Δu varies between countries. These differences were not explained by national cultural values. In conclusion, despite correction for various variables, utility differences between countries remain substantial and unexplained. This justifies the use of country-specific value sets for instruments such as the EQ-5D.

Patient and general population values for luminal and perianal fistulising Crohn's disease health states.

BACKGROUND: In patients with Crohn's disease (CD), luminal disease activity paralleled by perianal fistulas may seriously impair health-related quality of life (HRQoL). Health utility values are not available from patients with CD that reflect the health loss associated with both luminal and perianal CD. OBJECTIVE: To generate utilities for luminal and concomitant perianal fistulising CD health states directly from patients and from members of the general public. METHODS: A cross-sectional survey was undertaken enrolling CD patients and a convenience sample of members of the general population. Respondents were asked to evaluate four common CD heath states [severe luminal disease (sCD), mild luminal disease (mCD), severe luminal disease with active perianal fistulas (sPFCD), and mild luminal disease with active perianal fistulas (mPFCD)] by 10-year time trade-off (TTO). In addition, patients assessed their current HRQoL by the TTO method. RESULTS: Responses of 206 patients (40.8% with perianal fistulas) and 221 members of the general population were analysed. Mean ± SD utilities among patients for sPFCD, sCD, mPFCD and mCD states were 0.69 ± 0.33, 0.73 ± 0.31, 0.80 ± 0.29 and 0.87 ± 0.26. Corresponding values in the general public were: 0.59 ± 0.31, 0.65 ± 0.29, 0.80 ± 0.26 and 0.88 ± 0.25. Patients with active perianal fistulas, previous non-resection surgeries, and higher pain intensity scores valued their current health as worse (p < 0.05). CONCLUSIONS: TTO is a feasible method to assess HRQoL in patients with perianal fistulising disease, often not captured by health status questionnaires. Utilities from this study are intended to support the optimization of treatment-related decision making in patients with luminal disease paralleled by active perianal fistulas.

Shared decision-making for postoperative analgesia: A semistructured qualitative study.

BACKGROUND: Shared decision-making (SDM) and decision-support tools have attracted broad support in healthcare as they improve medical decision-making. Experts disagree on how these can help patients evaluate their present situation and possible outcomes of therapy, and how they might reduce decisional conflict. Little is known about their implementation, especially in anaesthesiology. OBJECTIVE: To obtain a more fundamental understanding of pre-operative SDM and evaluate the use of a decision-support tool for postoperative analgesia after major thoracic and abdominal surgery. DESIGN: A qualitative study with semistructured, in-depth interviews of patients and professionals. SETTING: Patient recruitment took place at the Radboud University Medical Centre in Nijmegen and the Canisius Wilhelmina Hospital in Nijmegen, a nonacademic teaching centre. Professionals of the Radboud University Medical Centre were invited to participate in the interviews. PARTICIPANTS: Interviews were performed with 10 individual patients and two focus groups both consisting of eight different professionals. MAIN OUTCOME MEASURES: To gain insight into the provision of pre-operative information, decision-making processes and the clarity and usability of a prototype decision-support tool. RESULTS: Professionals seemed to provide their patients with information directed towards the application of epidural analgesia, providing little attention to its negative effects. For many patients, the information was not tailored to their needs. Patients' involvement in decision-making was minimal, but they did not feel a need for more involvement. They were positive about the decision-support tool, although they indicated that it would not have influenced their treatment decision. Professionals expressed their doubt about the capacity of their patients to fully understand the decisions involved and about the clinical usability of the decision-support tool, because patients might misinterpret the information provided. CONCLUSION: The results of this study suggest that both patients and professionals did not adhere to some 'self-evident' principles of SDM when postoperative analgesia after major thoracic and abdominal surgery was discussed.

Quality-Adjusted Life-Years without Constant Proportionality.

BACKGROUND: A quality-adjusted life-year is a common unit of measurement in health valuation. Under its constant proportionality assumption, the value of a quality-adjusted life span is defined as the product of preference weight and life span. OBJECTIVES: To empirically identify an alternative functional relationship between life span and value by relaxing the constant proportionality assumption. METHODS: Using an online survey, 5367 respondents completed 30 to 40 paired comparisons where each involved a choice between two health outcomes: one with a longer life span and health problems (five-level EuroQol five-dimensional questionnaire) and the other with a shorter life span and no problems (time trade-off pair). Using 2670 pairs, a saturated model with indicator variables for 27 life spans and 90 health problems of varying duration and severity was estimated by maximum likelihood. Its coefficients empirically illustrate the relationship between life span and value on a quality-adjusted life-year scale. RESULTS: The results reject constant proportionality (P < 0.01) and support the use of a power function to describe the relationship between life span and value, namely, value = preference weight × life spanß. The estimate of power (ß = 0.415; 95% confidence interval 0.41-0.42) appears to depend on whether life span was expressed in a temporal unit of days (0.403), weeks (0.509), months (0.541), or years (0.654). CONCLUSIONS: Raising life span to a power less than 1 implies decreasing marginal value of life span and greatly improved model fit, and confirms previous violations of proportionality. This power function may replace conventional assumptions in health valuation studies. Nevertheless, governmental agencies may favor a longer time horizon than that of the general population.

Setting Dead at Zero: Applying Scale Properties to the QALY Model.

INTRODUCTION: Scaling severe states can be a difficult task. First, the method of measurement affects whether a health state is considered better or worse than dead. Second, in discrete choice experiments, different models to anchor health states on 0 (dead) and 1 (perfect health) produce varying amounts of health states worse than dead. RESEARCH QUESTION: Within the context of the quality-adjusted life year (QALY) model, this article provides insight into the value assigned to dead and its consequences for decision making. Our research questions are 1) what are the arguments set forth to assign dead the number 0 on the health-utility scale? And 2) what are the effects of the position of dead on the health-utility scale on decision making? METHODS: A literature review was conducted to explore the arguments set forth to assign dead a value of 0 in the QALY model. In addition, scale properties and transformations were considered. RESULTS: The review uncovered several practical and theoretical considerations for setting dead at 0. In the QALY model, indifference between 2 health episodes is not preserved under changes of the origin of the duration scale. Ratio scale properties are needed for the duration scale to preserve indifferences. In combination with preferences and zero conditions for duration and health, it follows that dead should have a value of 0. CONCLUSIONS: The health-utility and duration scales have ratio scale properties, and dead should be assigned the number 0. Furthermore, the position of dead should be carefully established, because it determines how life-saving and life-improving values are weighed in cost-utility analysis.

Decision aids for second-line palliative chemotherapy: a randomised phase II multicentre trial.

BACKGROUND: There is increasing recognition of the delicate balance between the modest benefits of palliative chemotherapy and the burden of treatment. Decision aids (DAs) can potentially help patients with advanced cancer with these difficult treatment decisions, but providing detailed information could have an adverse impact on patients' well-being. The objective of this randomised phase II study was to evaluate the safety and efficacy of DAs for patients with advanced cancer considering second-line chemotherapy. METHODS: Patients with advanced breast or colorectal cancer considering second-line treatment were randomly assigned to usual care (control group) or usual care plus a DA (intervention group) in a 1:2 ratio. A nurse offered a DA with information on adverse events, tumour response and survival. Outcome measures included patient-reported well-being (primary outcome: anxiety) and quality of the decision-making process and the resulting choice. RESULTS: Of 128 patients randomised, 45 were assigned to the control group and 83 to the intervention group. Median age was 62 years (range 32-81), 63% were female, and 73% had colorectal cancer. The large majority of patients preferred treatment with chemotherapy (87%) and subsequently commenced treatment with chemotherapy (86%). No adverse impact on patients' well-being was found and nurses reported that consultations in which the DAs were offered went well. Being offered the DA was associated with stronger treatment preferences (3.0 vs. 2.5; p=0.030) and increased subjective knowledge (6.7 vs. 6.3; p=0.022). Objective knowledge, risk perception and perceived involvement were comparable between the groups. CONCLUSIONS: DAs containing detailed risk information on second-line palliative treatment could be delivered to patients with advanced cancer without having an adverse impact on patient well-being. Surprisingly, the DAs only marginally improved the quality of the decision-making process. The effectiveness of DAs for palliative treatment decisions needs further exploration. TRIAL REGISTRATION: Netherlands Trial Registry (NTR): NTR1113 (registered on 2 November 2007).

Bleeding out the quality-adjusted life years: evaluating the burden of primary dysmenorrhea using time trade-off and willingness-to-pay methods.

Primary dysmenorrhea (PD), or painful menstruation in the absence of identified uterine pathology, affects 5 to 9 in every 10 reproductive-aged women. Despite its high prevalence, just a few studies with very small patient numbers have focused on health-related quality of life impairment in PD. We aimed to assess health-related quality of life values for a severe and a mild hypothetical PD health state using 10-year time trade-off and willingness-to-pay methods. In 2015, a nationwide convenience sample of women, aged between 18 and 40 years, was recruited using an Internet-based cross-sectional survey in Hungary. Respondents with a known history of secondary dysmenorrhea were excluded. Data on 1836 and 160 women, with and without a history of PD, respectively, were analysed. Mean utility values for the severe and mild health states were 0.85 (median 0.95) and 0.94 (median 1), respectively. Participants were willing to pay a mean of &OV0556;1127 (median &OV0556;161) and &OV0556;142 (median &OV0556;16) for a complete cure from the severe and mild PD health states. Compared with the non-PD group, women with PD valued both health states worse according to willingness to pay (P < 0.05) but similar in the time trade-off. It seems that PD substantially contributes to the quality-adjusted life year loss in this age group, which is comparable with losses from chronic diseases such as type 1 diabetes, asthma, atopic eczema, or chronic migraine. Our findings provide a useful input to cost-effectiveness and cost-benefit analyses of PD treatments.

Patients' Preferences for Information About the Benefits and Risks of Second-Line Palliative Chemotherapy and Their Oncologist's Awareness of These Preferences.

Communication about palliative treatment options requires a balance between providing patients with sufficient information and not providing unwanted information. Surveys have indicated that many patients with advanced cancer express a wish to receive detailed information. In this prospective multicenter study, the information desire of patients with advanced breast or colorectal cancer was further investigated by offering treatment-related information to patients using a decision aid (DA). In addition, this study explored oncologists' awareness of their patients' information desire. Seventy-seven patients with advanced breast or colorectal cancer facing the decision whether to start second-line palliative chemotherapy were offered a DA by a nurse. This DA contained information on adverse events, tumor response, and survival. The nurse asked the patient whether each information item was desired. Ninety-five percent of patients chose to receive information on adverse events, 91 % chose to receive information on tumor response, and 74 % chose to receive information on survival. Oncologists' judgment of patients' information desire was 100, 97, and 81 %, respectively. For all three information items together, oncologists correctly judged the information desire of 62 % of patients. This study confirms that many patients with advanced cancer wish to receive detailed information on the benefits and risks of palliative treatment options when the information is actually available. Oncologists were adequately aware of this high information desire, but had some difficulty judging the information desire of individual patients. A stepped approach to giving information ("preview, ask, tell, ask") may help to better meet patients' information needs.

Does a decision aid for prostate cancer affect different aspects of decisional regret, assessed with new regret scales? A randomized, controlled trial.

OBJECTIVE: To develop and validate new regret scales and examine whether a decision aid affects different aspects of regret in the treatment choice for prostate cancer. METHODS: This was a multicentre trial (three sites) with imbalanced randomization (1 : 2). From 2008 to 2011, patients with localized prostate cancer were randomized 1 : 2 to usual care (N = 77) or usual care plus a decision aid presenting risks and benefits of different treatments (N = 163). The treatments were surgery and (external or interstitial) radiotherapy. Regret was assessed before, and 6 and 12 months after treatment, using the Decisional regret scale by Brehaut et al. (Medical Decision Making, 23, 2003, 281), and three new scales focusing on process, option and outcome regret. The relation between decision aid and regret was analysed by anova. RESULTS: The concurrent validity of the new regret scales was confirmed by correlations between regret and anxiety, depression, decision evaluation scales and health-related quality of life. With a decision aid, patient participation was increased (P = 0.002), but regret was not. If anything, in patients with serious morbidity the decision aid resulted in a trend to less option regret and less Brehaut regret (P = 0.075 and P = 0.061, with effect sizes of 0.35 and 0.38, respectively). Exploratory analyses suggest that high-risk patients benefitted most from the decision aid. CONCLUSION: The new regret scales may be of value in distinguishing separate aspects of regret. In general, regret was not affected by the decision aid. In patients with serious morbidity, a trend to lower option regret with a decision aid was observed.

Synkinesis assessment in facial palsy: validation of the Dutch Synkinesis Assessment Questionnaire.

The objective of this study is to validate an existing health-related quality of life questionnaire for patients with synkinesis in facial palsy for implementation in the Dutch language and culture. The Synkinesis Assessment Questionnaire was translated into the Dutch language using a forward-backward translation method. A pilot test with the translated questionnaire was performed in 10 patients with facial palsy and 10 normal subjects. Finally, cross-cultural adaption was accomplished at our outpatient clinic for facial palsy. Analyses for internal consistency, test-retest reliability, and construct validity were performed. Sixty-six patients completed the Dutch Synkinesis Assessment Questionnaire and the Dutch Facial Disability Index. Cronbach's α, representing internal consistency, was 0.80. Test-retest reliability was 0.53 (Spearman's correlation coefficient, P < 0.01). Correlations with the House-Brackmann score, Sunnybrook score, Facial Disability Index physical function, and social/well-being function were -0.29, 0.20, -0.29, and -0.32, respectively. Correlation with the Sunnybrook synkinesis subscore was 0.50 (Spearman's correlation coefficient). The Dutch Synkinesis Assessment Questionnaire shows good psychometric values and can be implemented in the management of Dutch-speaking patients with facial palsy and synkinesis in the Netherlands. Translation of the instrument into other languages may lead to widespread use, making evaluation, and comparison possible among different providers.

Quality of life assessment in facial palsy: validation of the Dutch Facial Clinimetric Evaluation Scale.

This study aimed at validating an existing health-related quality of life questionnaire for patients with facial palsy for implementation in the Dutch language and culture. The Facial Clinimetric Evaluation Scale was translated into the Dutch language using a forward-backward translation method. A pilot test with the translated questionnaire was performed in 10 patients with facial palsy and 10 normal subjects. Finally, cross-cultural adaption was accomplished at our outpatient clinic for facial palsy. Analyses for internal consistency, test-retest reliability, construct validity and responsiveness were performed. Ninety-three patients completed the Dutch Facial Clinimetric Evaluation Scale, the Dutch Facial Disability Index, and the Dutch Short Form (36) Health Survey. Cronbach's α, representing internal consistency, was 0.800. Test-retest reliability was shown by an intraclass correlation coefficient of 0.737. Correlations with the House-Brackmann score, Sunnybrook score, Facial Disability Index physical function, and social/well-being function were -0.292, 0.570, 0.713, and 0.575, respectively. The SF-36 domains correlate best with the FaCE social function domain, with the strongest correlation between the both social function domains (r = 0.576). The FaCE score did statistically significantly increase in 35 patients receiving botulinum toxin type A (P = 0.042, Student t test). The domains 'facial comfort' and 'social function' improved statistically significantly as well (P = 0.022 and P = 0.046, respectively, Student t-test). The Dutch Facial Clinimetric Evaluation Scale shows good psychometric values and can be implemented in the management of Dutch-speaking patients with facial palsy in the Netherlands. Translation of the instrument into other languages may lead to widespread use, making evaluation and comparison possible among different providers.

Values for health states with different life durations.

BACKGROUND: Recent research suggests that the value of health states may depend on their duration, implying a more complex relationship between quality and quantity of life than the standard linear relationship assumed in the quality-adjusted life years (QALY) model. OBJECTIVE: This study models how duration affects the value of health states, using discrete choice data. METHODS: A study was conducted comprising health profiles including various durations. Health states were described with the EQ-5D. Duration was introduced as a sixth domain with six levels (1, 5, 10, 15, 30, 50 years). Sixty pairs of health profiles were selected, applying a Bayesian approach. Two hundred eight university students self-completed the computerized response tasks. Data were analyzed with a conditional logistic regression model. RESULTS: There is clear evidence for non-linear values for duration, that is, preferences for duration are more accurately described by a logarithmic function. CONCLUSIONS: In discrete choice experiments using health states with different durations, these data present the first evidence for decreasing marginal utility for duration. Our results suggest that refinement of the standard QALY framework may be needed for states with a long duration.

Expected survival with and without second-line palliative chemotherapy: who wants to know?

BACKGROUND: According to surveys, many patients with advanced cancer wish to receive survival information. OBJECTIVE: This study investigated information preferences by offering patients a decision aid (DA) with information on expected survival for two treatment options: supportive care with or without second-line palliative chemotherapy. Predictors of accepting survival information were explored. DESIGN: Eligible patients in this multicentre prospective study were offered second-line chemotherapy for advanced breast or colorectal cancer. A nurse presented a DA on second-line treatment and asked patients whether they desired information on (i) adverse events, (ii) tumour response and (iii) survival. Data on 50 clinical and psychosocial patient characteristics were collected from inclusion forms and patient questionnaires. RESULTS: Seventy-seven patients received a DA; median age 62 years (range 32-80), 61% female, 77% colorectal cancer. Fifty-seven patients (74%; 95% CI 64-84) desired survival information. Four psychosocial characteristics (e.g. deliberative decision style) independently predicted information desire. However, the use of these characteristics to predict information desire hardly outperformed a simple prediction rule. CONCLUSIONS: Many patients desired information on expected survival when deciding about second-line treatment. However, our exploratory analysis indicated that patients desiring this information could not be identified based on their clinical or psychosocial characteristics. These findings can help encourage candid discussions about expected survival. Health professionals should be careful not to make implicit assumptions of information desire based on patient characteristics, but to explicitly ask patients if survival information is desired, and act accordingly.

Exploring the Routine Administration of Decision Aids for Palliative Chemotherapy to Patients by Nurses: A Qualitative Study Among Nurses and Oncologists.

BACKGROUND: Decision aids (DAs) effectively support patient decision making but are rarely used in daily practice. OBJECTIVE: To explore nurses' and oncologists' views on routinely offering DAs on palliative chemotherapy to patients by nurses. Most interviewees had clinical experience with the DAs, which were booklets administered to patients by nurses. METHODS: The study was guided by 3 theoretical implementation models of innovations in clinical practice, including factors related to the innovation, the professionals (nurses and oncologists), the patient, and the organization. Semistructured interviews were conducted among 12 nurses and 14 oncologists. Interviews were audio taped and fully transcribed. RESULTS: The main barriers to routinely offering DAs to patients were found in nurses' and oncologists' opinions and attitudes (eg, concerns about the impact in this vulnerable population) and in the logistics of organizations (eg, the decision is already made before the nurse sees the patient). Twenty-two of 26 interviewees were open to the future use of the DAs. Disseminating information to professionals (eg, about positive effects of DAs) and embedding DAs in the existing workflow would facilitate implementation. CONCLUSIONS: Most nurses and oncologists were open to the future use of the DAs by nurses, provided that certain barriers, particularly related to professionals' opinions and attitudes and logistical procedures in the organization, could be overcome. IMPLICATIONS FOR PRACTICE: These findings can inform a tailored strategy to implement DAs on palliative chemotherapy. Implementation should start with interventions to motivate professionals, for example, educational meetings.

Efficacy and safety of palliative chemotherapy for patients with advanced breast cancer pretreated with anthracyclines and taxanes: a systematic review.

No standard monotherapy or combination palliative chemotherapy currently exists for patients with advanced breast cancer pretreated with anthracyclines and taxanes. In this systematic review we assess the current knowledge on the efficacy and safety of palliative single-agent chemotherapy drugs--capecitabine, vinorelbine, gemcitabine, and liposomal doxorubicin--commonly used in daily clinical practice. We identified 22 studies, of which ten investigated capecitabine, nine investigated vinorelbine, three investigated gemcitabine, and one investigated liposomal doxorubicin. The greatest amount of information was available for capecitabine and vinorelbine. These two drugs showed good efficacy. The disease control rate differed significantly between the four drugs, which is relevant in terms of how well tumour symptoms can be improved and whether quality of life can be maintained or even improved. To obtain more evidence of the efficacy and safety of chemotherapeutic agents used in this pretreated population of advanced breast cancer patients, randomised comparisons of the various drugs, as monotherapy and in combination with targeted agents, are needed.