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Purpose To improve shared decision making (SDM) with advanced cancer patients, communication skills training for oncologists is needed. The purpose was to examine the effects of a blended online learning (i.e. e-learning and online training session) for oncologists about SDM in palliative oncological care and to compare this blended format with a more extensive, fully in-person face-to-face training format. Methods A one-group pre-posttest design was adopted. Before (T0) and after (T2) training, participants conducted simulated consultations (SPAs) and surveys; after the e-learning (T1), an additional survey was filled out. The primary outcome was observed SDM (OPTION12 and 4SDM). Secondary outcomes included observed SDM per stage, SPA duration and decision made as well as oncologists’ self-reported knowledge, clinical behavioural intentions, satisfaction with the communication and evaluation of the training. Additionally, outcomes of the blended learning were compared with those of the face-to-face training cohort. Analyses were conducted in SPSS by linear mixed models. Results Oncologists (n = 17) showed significantly higher SDM scores after the blended online learning. The individual stages of SDM and the number of times the decision was postponed as well as oncologists’ beliefs about capabilities, knowledge and satisfaction increased after the blended learning. Consultation duration was unchanged. The training was evaluated as satisfactory. When compared with the face-to-face training, the blended learning effects were smaller. Conclusion Blended online SDM training for oncologists was effective. However, the effects were smaller compared to face-to-face training. The availability of different training formats provides opportunities for tailoring training to the wishes and needs of learners.

Purpose Cancer patients are increasingly involved in decision-making processes. Hence, clinicians need to inform patients about the risks and benefits of different treatment options in order for patients to make well informed decisions. The aim of this review is to determine the effects of methods of communicating prognostic information about (1) disease progression (survival, progression, recurrence and remission), (2) side effects and complications and (3) health-related quality of life (HRQL) on cognitive, affective and behavioral outcomes in cancer patients. Methods A literature search was performed to select articles that were published up to November 2019 and that examined verbal and/or visual risk communication interventions in an oncological clinical setting. Results The search yielded 14,875 studies; 28 studies were ultimately included. For disease progression information, we found that framing affects treatment choice. Furthermore, limiting the amount of progression information in a graphical display could benefit patients’ understanding of risks and benefits. For prognostic information about side effects and complications, precise and defined risk information was better understood than information presented in words. When displaying HRQL data, no consensus was found on which graph type to use. Conclusion Great heterogeneity in the results and methodology and in the compared communication formats precluded us from drawing any further conclusions. Practical implications for clinicians are to consider the effects that different types of framing might have on the patient and to not rely exclusively on words to describe risks, but rather include at least some form of numbers or visualization.

Background In shared decision making (SDM), patients and physicians work together to choose the best treatment option for an individual patient. Atopic dermatitis (AD) and psoriasis are particularly suitable for SDM, considering that the best treatment option depends on a patient’s preferences and values (preference‐sensitive decisions). Currently, it is unknown to what extent SDM is applied in treatment decisions for these diseases in the Netherlands. Objectives Primary, to assess the current extent of SDM in AD and psoriasis in the Netherlands amongst patients and dermatologists. Secondary, to assess the degree to which patients and physicians endorse SDM, to explore which characteristics are related to their preference to be involved in SDM and to identify which barriers and facilitators for SDM they perceive. Methods Two similar online surveys, one for patients with AD or psoriasis and one for (resident) dermatologists, were carried out. The surveys comprised validated questionnaires (shared decision making questionnaire (SDM‐Q; range 0–100), Control Preference Scale) and study‐specific statements mainly regarding barriers and facilitators for SDM. Results The responses of 219 patients and 147 physicians were analysed. Dermatologists experienced significantly more SDM than patients (SDM‐Q 82 vs 55; P

Prognostic communication is essential for patients with advanced cancer to enable informed medical decision-making and end-of-life planning. Discussing prognosis is challenging, and might be especially complex for oncologists conducting a second opinion (SO). Survival data are often lacking, and consulting oncologists need to consider previously conveyed information and patients’ relationship with the referring oncologist. We qualitatively investigated how advanced cancer patients and consulting oncologists discuss prognosis during audio-recorded SO consultations (N = 60), including prognostic information received from the referring oncologist. Our results show that patients regularly expressed implicit cues to discuss prognosis or posed explicit questions tentatively. Consulting oncologists were mostly unresponsive to patients’ cues and cautious to prognosticate. They also seemed cautious when patients brought up the referring oncologist. Consulting oncologists checked which prognostic information patients had received from the referring oncologist, before estimating prognosis. They agreed with the first opinion or rectified discrepancies carefully. Altogether, this study exposes missed opportunities for open prognostic discussions in SOs. Consulting oncologists could explicitly explore patients’ information preferences and perceptions of prognosis. If desired, they can provide tailored, independent information to optimise patients’ prognostic awareness and informed medical decision-making. They may additionally support patients in dealing with prognosis and the uncertainties associated with it.

Objective This study aims to identify patients with oesophageal cancer's level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancer's level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival. Methods We implemented the Distress Thermometer and Problem List in daily clinical practice. A score of ≥5 on the Distress Thermometer reflected elevated distress. We first created an initial model including predictors based on the literature. We then added predictors to the initial model to create an extended model based on the sample data. We used the ‘least absolute shrinkage and selection operator’ to define our final model. Results We obtained data from 187 patients (47.9%, of 390 eligible patients with oesophageal cancer) which were similar to non-respondents in their demographic and clinical characteristics. One-hundred thirteen (60%) patients reported elevated distress. The five most frequently reported problems were as follows: eating, tension, weight change, fatigue, and pain. Most patients did not have a wish for referral. Predictors for elevated distress were as follows: being female, total number of practical, emotional, and physical problems, pain, and fatigue. For referral, we identified age, the total number of emotional problems, the level of distress, and fear. The level of distress added prognostic information in a model to predict overall survival. Conclusions Patients with oesophageal cancer report elevated distress and a myriad of problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan. Copyright © 2016 John Wiley & Sons, Ltd.

Background Systemic treatment for advanced cancer offers uncertain and sometimes little benefit while the burden can be high. Hence, treatment decisions require Shared Decision Making (SDM). The CHOICE trial examines the separate and combined effect of oncologist training and a patient communication aid on SDM in consultations about palliative systemic treatment. Methods A RCT design with four parallel arms will be adopted. Patients with metastatic or irresectable cancer with a median life expectancy

We developed a web-based question prompt sheet (QPS) to support information provision of health-related quality of life (HRQL) topics after oesophageal cancer surgery. The QPS was evaluated and updated in three consecutive studies. In Study 1, eight patients were guided in using the QPS. Feasibility was assessed by cognitive walkthrough, questionnaire and interview. We obtained 430 notes (217 negative, 213 positive) of patients' actions and or remarks, and 91 suggestions. With minor support, most patients were able to use the QPS. In Study 2, forty patients independently used and appraised a modified version of the QPS by questionnaire. All patients deemed the QPS to be usable and useful. In Study 3, 21 patients and three surgeons used the QPS in clinical practice. Clinical feasibility was assessed by the number of QPS sent to the researcher/surgeon. Patients and surgeons were surveyed and the follow-up consultation was audio-recorded. Surgeons were additionally interviewed. Twenty/fourteen patients sent their QPS to the researcher/surgeon. Five QPSs were read by the consultation surgeon. Patients considered the QPS usable and useful. Surgeons considered the QPS of added value and helpful in informing patients, but currently not clinically feasible due to increased consultation time.

This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (

Objective: Cancer patients need information provision to cope with their disease. However, only 20-60% of information provided during consultations is remembered. This study aimed to investigate whether oncologists' use of trust-conveying communication, characterized by communicating competence, honesty and caring, enhances patients' memory. Moreover, we aimed to investigate if this hypothetical relationship is mediated by a reduction in psychophysiological arousal during the consultation. Methods: An experimental design was used, allowing for conclusion about causality. Two versions of a scripted video-taped consultation were used in which the oncologist adopted either a standard or a trustconveying communication style. 97 cancer-naive individuals acted as analogue patients and were randomly assigned to watch one of the consultations. Results: Free recall, assessed 24-28 h after viewing, was higher (p = 0.039) in the trust-conveying condition (65.3% versus 59.5%). Recognition did not differ (p = 0.502). Psychophysiological assessment during watching showed a smaller heart rate response in the trust-conveying condition (p = 0.037). No mediation effect nor an effect on electrodermal activity was found. Conclusion: These results suggest that oncologists' use of trust-conveying communication could increase patients' free recall of information and diminish their cardiovascular response. Practice implications: The underlying mechanisms by which oncologists' communication influences information recall warrants further investigation. (C) 2017 Elsevier B.V. All rights reserved

We greatly appreciate the thoughtful comments of Gokani and colleagues [1] in response to our article “Older Cancer Patients’ User Experiences With Web-Based Health Information Tools: A Think-Aloud Study” [2]. We are happy to elaborate on the points for which they request further clarification.First, they have concerns about our recruitment strategy of study participants via a patient panel (PanelCom) that would lead to participants being more experienced Internet users as compared to the average older adult. However, it is a misunderstanding that PanelCom is a service which “recruits cancer patients via email.” As explained in the paper (under the subheading ‘study design, setting, and sample’ in the methods section), PanelCom is a panel of cancer patients who previously participated in studies of the Departments of Communication Science and Medical Psychology and consented to be contacted again in future studies. These previous studies were not necessarily online; especially older participants were mostly recruited in hospitals. Nevertheless, (older) patients that have no experience with Web-based technology are not likely to use Web-based health information tools. Hence they were not the target population of this study. However, 61% of our sample does consist of participants that have no to very little experience in using a computer or tablet (ie, 0-2 hours per week; see table 1 in the paper).The second point of concern that Gokani et al raise is that the usage pattern of the websites we have tested might be different had we also taken search queries in search engines such as Google into account. We agree (under subheading ‘cancer information websites’ under materials in the methods section, where we mention that people tend to look no further than the first page of the search results), and we took this into account by selecting two websites that were the first results on Google for searches for the Dutch words for “chemotherapy,” “cancer,” and “hospital.” Furthermore, the aim of the current study was to identify usability issues in order to make recommendations for the design of usable Web-based health information tools for older patients as a preparation for the systematic development of a web-based health information tool, the Patient Navigator. The Patient Navigator will be provided by hospitals and healthcare providers. This means that users will directly access the website rather than a search engine. The question how older (cancer) patients search for online health information covering the whole navigational usage pattern remains an interesting question for future research. Moreover, we agree that the factors suggested by Gokani et al such as currency, authorship, and bias contained within healthcare might influence perceived usefulness and that these factors should be investigated in future research.Third, Gokani et al suggest that recommendations are needed that enhance the ability to personalize Web-based tools rather than generalized recommendation. Indeed, the digital nature of Web-based tools allows the tailoring of the design and information to individual needs and preferences of patients, which is why we recommend tailoring on websites for older cancer patients (under the subheading ‘comparison with prior work and practical implications’ in the discussion section). A simple way of self-tailoring is our recommendation to “avoid large amounts of information on a page. If possible, display options on 1 page, for example, first provide an overview with options, and then (after visitors choose what information they wish to read) the relevant information.” Limited information on a webpage would make it possible to provide patients with a large font size to enable them to avoid scrolling. We agree with Gokani et al that more research is needed on other ways of tailoring that could benefit older patients, such as mode tailoring and message frame tailoring, next to content tailoring (see work by our research group [3,4]).Finally, Gokani et al comment that “the true value of integrating the tools within the patient consultation could also be further explored.” We couldn’t agree more with this comment. Hence, this is the next step in our research project. We expect that the Patient Navigator will help patients in processing information and in preparing for the consultation with their healthcare provider. At the moment we are collecting the data to evaluate the clinical use of the Patient Navigator.

Purpose The aim of this study was to develop and validate the Trust in Oncologist Scale (TiOS), which aims to measure cancer patients' trust in their oncologist. Structure, reliability and validity were examined. Methods Construction of the TiOS was based on a multidimensional theoretical framework. Cancer patients were surveyed within a week after their consultation. Trust, satisfaction, trust in health care, self-reported health and background variables were assessed. Dimensionality, internal consistency, test–retest reliability and construct validity were investigated. Results Data of 423 patients were included (response rate = 65%). After item reduction, the TiOS included 18 items. Trust scores were high. Exploratory factor analysis suggested one-dimensionality. Confirmatory factor analysis nevertheless indicated a reasonable fit of our four-dimensional theoretical model, distinguishing competence, fidelity, honesty and caring. Internal consistency and test–retest reliabilities were high. Good construct validity was indicated by moderate correlations of trust (TiOS) with satisfaction, trust in health care, willingness to recommend and number of consultations with the oncologist. Exploratory analyses suggested significant correlations of trust with ethnicity and age. Conclusions The TiOS reliably and validly assesses cancer patients' trust in their oncologist. The questionnaire can be employed in both clinical practice and future research of cancer patients' trust.

Background. Patients with hypertrophic cardiomyopathy (HCM) and HCM mutation carriers are at risk of sudden cardiac death (SCD). Both groups should therefore be subject to regular cardiological testing - including risk stratification for SCD - according to international guidelines. We evaluated Dutch cardiologists' knowledge of and adherence to international guidelines on risk stratification and prevention of SCD in mutation carriers with and without manifest HCM.Methods. A questionnaire was sent to 1109 Dutch cardiologists (in training) containing case-based questions.Results. The response rate was 21%. Own general knowledge on HCM care was rated as insufficient by 63% of cardiologists. The percentage of correct answers (i.e. in agreement with international guidelines), on the case-based questions ranged from 37 to 96%, being lowest in cases with an unknown number of risk factors for SCD. A substantial portion of correct answers was based on the correct answer 'ask an expert opinion'. Significantly more correct answers were provided in cases with manifest HCM. There was little difference between the answers of cardiologists with different self-reported levels of knowledge, with different numbers of HCM patients in their practice or with different numbers of carriers without manifest HCM.Conclusion. Knowledge on risk stratification and preventive therapy was mediocre, and knowledge gaps exist, especially on HCM mutation carriers without manifest disease. Fortunately, experts are frequently asked for their opinion which might bring patient care to an adequate level. Hopefully, our results will stimulate cardiologists to follow developments in this field, thereby increasing quality of care for HCM patients and mutation carriers. (Neth Heart J 2009;17:464-9.).

Important insights in the process of genetic counseling can be provided by establishing levels of satisfaction. The aim of our study was to compare counselees' and counselors' satisfaction with the initial consultation in reproductive genetic counseling and to gain insight into the factors associated with their contentment. One hundred and fifty-one women and 11 counselors participated in this study. Pre-test questionnaires included counselees' socio-demographic, physical and psychological characteristics, i.e. their degree of worry, expectations, preferred participation in decision making and experienced degree of control. Post-visit questionnaires asked for counselees' and counselors' satisfaction, counselees' participation in decision making and counselees' Perceived Personal Control (PPC). Little difference was found between counselees' and counselors' overall visit-specific satisfaction (mean 79 vs 74, respectively, on a visual analogue scale from 0 to 100). The correlation between counselees' and counselors' satisfaction was medium sized (r = 0.26, p < 0.01). Counselees' satisfaction was positively associated with being pregnant and with their post-visit PPC. Counselors' satisfaction was positively associated with counselees' post-visit PPC. No other counselee and counselor related variables appeared to be associated with satisfaction, nor was the duration of the consultation. Our findings suggest that, although both groups were satisfied with the consultation, counselees and counselors do not always have equal perceptions of the consultation process and may form their evaluation in different ways. In the assessment of quality of care, evaluation of both counselees' and counselors' satisfaction deserves more attention.

To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision?Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative.The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures.It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.

Background Surgeons provide patients with information before surgery, although standards of information are lacking and practice varies. The development and use of a ‘core information set’ as baseline information before surgery may improve understanding. A core set is a minimum set of information to use in all consultations before a specific procedure. This study developed a core information set for oesophageal cancer surgery. Methods Information was identified from the literature, observations of clinical consultations and patient interviews. This was integrated to create a questionnaire survey. Stakeholders (patients and professionals) were surveyed twice to assess views on importance of information from ‘not essential’ to ‘absolutely essential’ using Delphi methods. Items not meeting predefined criteria were discarded after each survey and the final retained items were voted on, in separate patient and professional stakeholder meetings, to agree the core set. Results Some 67 information items were identified initially from multiple sources. Survey response rates were 76·5 per cent (185 of 242) and 54·8 per cent (126 of 230) for patients and professionals respectively (first round), and over 83 per cent in both groups thereafter. Health professionals rated short-term clinical outcomes most highly (technical complications), whereas patients prioritized information related to long-term benefits. The consensus meetings agreed the final set, which consisted of: in-hospital milestones to recovery, rates of open-and-close surgery, in-hospital mortality, major complications (reoperation), milestones in recovery after discharge, longer-term eating and drinking and overall quality of life, and chances of survival. Conclusion This study has established a core information set for surgery for oesophageal cancer.

This study aims to identify patients with oesophageal cancer's level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancer's level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival.We implemented the Distress Thermometer and Problem List in daily clinical practice. A score of ≥5 on the Distress Thermometer reflected elevated distress. We first created an initial model including predictors based on the literature. We then added predictors to the initial model to create an extended model based on the sample data. We used the 'least absolute shrinkage and selection operator' to define our final model.We obtained data from 187 patients (47.9%, of 390 eligible patients with oesophageal cancer) which were similar to non-respondents in their demographic and clinical characteristics. One-hundred thirteen (60%) patients reported elevated distress. The five most frequently reported problems were as follows: eating, tension, weight change, fatigue, and pain. Most patients did not have a wish for referral. Predictors for elevated distress were as follows: being female, total number of practical, emotional, and physical problems, pain, and fatigue. For referral, we identified age, the total number of emotional problems, the level of distress, and fear. The level of distress added prognostic information in a model to predict overall survival.Patients with oesophageal cancer report elevated distress and a myriad of problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan. Copyright © 2016 John WileySons, Ltd.

Background. Action aimed at changing smoking behavior to prevent cardiovascular patients from further impairing their health is advisable. Cognitive behavioral interventions can be effective in this regard since they attempt to influence cognitive determinants that presumably lead to smoking cessation. The Minimal Intervention Strategy for Cardiology patients (C-M IS) is such an intervention, tailored to the patients' readiness to change, Our aim is to investigate whether the C-MIS is successful in changing patients' cognitions such as attitudes, social influence, self-efficacy and intention to quit during a 1-year period,Methods. Smoking outpatients (N = 315) with cardiovascular disease were included, They were randomized and received either Nicotine Replacement Therapy (NRT) or NRT + C-MIS. At baseline (T I), sociodemographic and clinical characteristics were measured. Cognitions and quitting behavior were assessed at baseline and at four follow-up measurements,Results. Comparing treatments, the C-MIS did not affect pros of quitting. pros of smoking and social influence, We did find small effects of the C-MIS on intention to quit and self-efficacy, although only for higher-educated patients.Conclusion. The C-MIS appears successful in affecting intention to quit and self-efficacy abilities, but only for patients with higher education levels. Initial positive changes in cognitions may also emerge in a medical intervention. such as the provision of NRT. &COPY; 2004 Elsevier Inc. All rights reserved.

Reproductive genetic counseling for a familial genetic risk factor preferably takes place before conception. However, of the women with a family history of genetic conditions who attend our department of clinical genetics, about 10-20% attend for the first time during a pregnancy. The current study aims to explore patient-related factors that may affect this late timing of reproductive genetic counseling. Consecutive pregnant (n = 100) and non-pregnant (n = 84) women visiting the department of clinical genetics for a genetic risk factor which was not age related completed a questionnaire immediately prior to the consultation. The questionnaire asked for (a) background characteristics, i.e. socio-demographic, obstetric, and disease characteristics (b) cognitive factors, i.e. initiative of referral, knowledge of the risk factor involved, risk perception, worry, child wish, attitudes toward abortion, and preferred participation in decision making, and (c) reasons for the timing of the consultation and for seeking genetic counseling. Pregnant women appeared to be higher educated, considered their children more often as healthy and were less often affected themselves, as compared to non-pregnant women. They also estimated their chance of having an affected child as lower, and they worried less. Furthermore, the initiative for referral was taken less often by the pregnant woman herself and more often by a medical worker. There were no major differences between the two study groups in knowledge, perceived severity of the risk factor, child wish, attitudes toward abortion, desired participation in decision making, and reasons to seek genetic counseling. Women indicated no specific reasons for their timing of referral for reproductive genetic counseling, e.g. during vs before pregnancy. Our data suggest that this timing of referral is not influenced predominantly by the women's level of knowledge. Rather, women's estimation of genetic risks and their degree of worry, which may be in accordance with the actual risk figures, seem to play a role in seeking genetic counseling. Although further studies are required, a more active role of health care providers seems warranted if we want to prevent genetic counseling for familial genetic conditions during pregnancy as much as possible.

Objective. To establish the psychometric properties of the Satisfaction with Hospital Care Questionnaire (SHCQ) for measuring patient satisfaction and evaluations of hospital care quality. Design and participants. Patients (n = 275) and staff members (n = 83) of four hospital wards completed the 57-item SHCQ addressing 13 aspects of care. Staff members completed the SHCQ from the patient's perspective. The data were analyzed within the framework of generalizability theory. Main outcome measures. Generalizability coefficients (GCs) and standard errors of measurement (SEs). Results. GCs indicating differentiation among patients with different overall levels of satisfaction (SHCQ mean scores) were high (>0.90). GCs indicating differentiation among patients as to satisfaction with aspects of care (SHCQ scale scores) were generally satisfactory (>0.75) to high. Patients agreed well on overall level of hospital care quality (GCs >0.90) and differentiated reliably (GCs >0.80) among aspects of care. No differentiation among wards was found with respect to quality of care. Patients and staff agreed to a considerable extent (0.78) on ranking the SHCQ items on care quality, but staff ratings were lower. Reliability and validity of patients' evaluations of quality of hospital care varied according to aspect of care. Conclusions. The SHCQ reliably establishes both patient satisfaction and overall quality of hospital care. Whereas patients' ratings may be too lenient, their ranking of the items on care quality appears to be valid, and is therefore suitable for monitoring and improving hospital care. Within scales, however, results should be interpreted more cautiously: for some items, patients cannot really tell the difference in quality of care

This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (65 years) and older (≥65 years) colorectal cancer patients were randomly exposed to a webpage about transanal endoscopic microsurgery consisting of either text-only information, text with two cognitive illustrations or text with two affective illustrations. In general, adding cognitive illustrations compared with text-only information improved the satisfaction with the attractiveness of the website in both younger and older patients. For older patients in particular, cognitive illustrations facilitated recall of cancer information: whereas older patients recalled less information overall compared with younger patients (39% vs. 50%), no statistically significant differences in age on recall were observed when cognitive illustrations were added to text. Furthermore, older patients were more satisfied with the emotional support from the website than younger patients, especially when affective illustrations were present. Our results suggest that effective online cancer communication for ageing populations involves considering both cognitive and affective illustrations to enhance website satisfaction and recall of cancer information.

Background There is no consensus among patients and healthcare professionals (HCPs) on the topics that need to be addressed after oesophageal cancer surgery. The aim of this study was to identify these topics, using a two-round Delphi survey. Methods In round 1, patients and HCPs (surgeons, dieticians, nurses) were invited to rate the importance of 49 topics. The proportion of panellists that considered a topic to be of low, moderate or high importance was then calculated for each of these two groups. Based on these proportions and the i.q.r., topics were categorized as: ‘consensus to be included’, ‘consensus to be excluded’ and ‘no consensus’. Only topics in the first category were included in the second round. In round 2, panellists were provided with individual and group feedback. To be included in the final list, topics had to meet criteria for consensus and stability. Results There were 108 patients and 77 HCPs in the round 2 analyses. In general, patients and HCPs considered the same topics important. The final list included 23 topics and revealed that it was most important to address: cancer removed/lymph nodes, the new oesophagus, eating and drinking, surgery, alarming new complaints and the recovery period. Conclusion The study provides surgeons with a list of topics selected by patients and HCPs that may be addressed systematically at the initial follow-up consultation after oesophageal cancer surgery.

The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality-of-life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neoadjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. We included the data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.

Item does not contain fulltext BACKGROUND: Cancer patients need to trust their oncologist to embark in the process of oncologic treatment. Yet, it is unclear how oncologist communication contributes to such trust. The aim of this study was to investigate the effect of three elements of oncologists' communication on cancer patients' trust: conferring competence, honesty, and caring. METHODS: Eight videotaped consultations, 'vignettes', were created, reflecting an encounter between an oncologist and a patient with colorectal cancer. All vignettes were identical, except for small variations in the oncologist's verbal communication. Cancer patients (n = 345) were randomly assigned to viewing two vignettes, asked to identify with the patient and afterwards to rate their trust in the observed oncologist. The effects of competence, honesty, and caring on trust were established with multilevel analysis. RESULTS: Oncologist's enhanced expression of competence (beta = 0.17, 95% CI 0.08, 0.27; P < 0.001), honesty (beta = 0.30, 95% CI 0.20, 0.40; P < 0.001), as well as caring (beta = 0.36, 95% CI 0.26, 0.46; P < 0.001) resulted in significantly increased trust. Communication of honesty and caring also increased patients' expectation of operation success and reported willingness to recommend the oncologist. CONCLUSION(S): As hypothesized, oncologists can influence their patients' trust by enhanced conveyance of their level of competence, honesty, and caring. Caring behavior has the strongest impact on trust. These findings can be translated directly into daily clinical practice as well as in communication skills training.

OBJECTIVE Testosterone deficiency is associated with significant morbidity, and androgen replacement in overt hypogonadism is clearly beneficial. However, there are few data concerning the response to therapy in young men with mild testosterone deficiency. DESIGN AND PATIENTS We have identified a cohort of 35 men, mean age 40·9 years, with mild Leydig cell dysfunction, defined by a raised LH level (LH ≥ 8 IU/l) and a testosterone level in the lower half of the normal range or frankly subnormal (testosterone

BACKGROUND: A self-report questionnaire is the most widely used method to assess (in)patients' satisfaction with (hospital) care. However, problems like nonresponse, missing values, and skewed score distributions may threaten the representativeness, validity, and reliability of results. We investigated which of alternative item-response formats maximizes desired outcomes. DESIGN: Five formats were compared on the basis of sample characteristics, psychometric properties at the scale and item levels, and patients' opinions of the questionnaire. SUBJECTS: Consecutively discharged patients (n=784) were sampled, of which a representative (sex, age, length of hospital stay) subsample of 514 (65%) responded. MEASURES: A 54-item satisfaction questionnaire addressing 12 aspects of care was used. Patients responded using either a 10-step evaluation scale ranging from "very poor" to "excellent" (E10), a 5-step evaluation scale ranging from "poor" to "excellent" (E5), or a 5-step satisfaction scale ranging from "dissatisfied" to "very satisfied" (S5). The 5-step scales were administered with response options presented as either boxed scale steps to be marked or words to be circled. RESULTS: E5 scales yielded lower means than S5 scales. However, at the item level, the S5 scale showed better construct validity, more variability, and less peaked score distributions. Circling words yielded fewer missing item scores than marking boxes. The E5 scale showed more desirable score distributions than the E10 scale, but construct validity and reliability were lower. CONCLUSIONS: No large differences among formats were found. However, if individual items are important carriers of information, a (5-step) satisfaction response scale, with response options presented in words next to each item, appears to be the optimal format

Fatigue, sexual dysfunction, anxiety and depression are all more common in patients who have previously been treated with cytotoxic chemotherapy and radiotherapy (XRT) for haematological malignancies. Following therapy, a significant proportion of men have biochemical evidence of Leydig cell dysfunction, defined by a raised luteinizing hormone level in the presence of a low/normal testosterone level. We postulated that mild testosterone deficiency may account for some of the long-term side-effects of treatment, and we have therefore assessed fatigue, mood and sexual function by questionnaire in 36 patients with Leydig cell dysfunction (group 1), and also in a group of 30 patients (group 2) with normal hormone levels who underwent the same treatment for cancer. There was no significant difference in anxiety and depression scores between the two groups although anxiety scores were higher than those previously reported for normal men. Eighty-seven per cent of group 2 were sexually active compared with only 69% of group 1 (P = 0.1), and patients in group 1 engaged less in sexual activity than those in group 2 (mean of 1.8 times per week compared with 3.2 times per week;P = 0.02) Fatigue scores were significantly higher in both groups compared with normal men, but there were no significant differences in any of the fatigue subscales between the two groups. We conclude that mild Leydig cell insufficiency following treatment with cytotoxic chemotherapy ± XRT is not associated with higher levels of fatigue and anxiety but may result in reduced sexual function. These results do not provide a convincing argument that androgen replacement therapy is mandatory to improve quality of life in the majority of these patients, although it may be beneficial in a minority. To establish criteria for selection of patients for a trial of androgen therapy a randomized placebo-controlled study will be necessary. © 2000 Cancer Research Campaign

This study tests the hypothesis that a discrepancy between resources and demands explains most of the variance in fatigue in cancer patients undergoing radiotherapy. Patients (n=250) were interviewed at pretreatment, posttreatment, and at 9-month follow-up. Resources involved physical condition, neuroticism, optimism, social support, gender, age, and level of education. Demands entailed prognosis, radiotherapy dose, the effort associated with actual activity, and the patient's perception of overall burden. Regression analyses were performed, using interaction terms to operationalize the discrepancy between resources and demands. The hypothesis was not supported. At pretreatment, physical condition explained most of the fatigue, whereas, at posttreatment, both the patients' physical condition and perception of burden contributed to fatigue. At follow-up, demands did not add to the variance already explained by resources, and vice versa. Factors that contribute to the patient's physical condition before starting radiotherapy and to his/her perception of burden need to be addressed to further our understanding of their fatigue.

In a study concerning a group of cancer patients undergoing radiotherapy three research questions were addressed. (1) Is fatigue a valid criterion for depression in these somatically ill patients? (2) What is the 'cause-and-effect' relation between fatigue and depression? (3) To what extent are fatigue and depression related to patients' quality of life. A heterogeneous sample of cancer patients (n = 250) were interviewed before treatment, 2 weeks after treatment and 9 months later. Fatigue was measured using the MFI, a self-report instrument covering five dimensions of fatigue. Depression was assessed with the non-somatic items of the CES-D. Quality of life had to be indicated on a Cantrill ladder. Fatigue and depression do not follow the same course over time. Just after radiotherapy, fatigue had either increased or remained stable, depending on the dimension under consideration. Depression, in contrast, decreased. Nine months later fatigue had decreased, whereas levels of depression remained stable. Concurrent relations between fatigue and depression were mostly moderate. There was no strong evidence for a cause-and-effect relationship between depression and fatigue. Depression showed highest concurrent relationships with quality of life, especially before treatment. Prospectively, depression and the dimension of physical fatigue were the main predictors for quality of life. Fatigue is not a valid criterion for depression in these patients. Nor is there a strong cause-and-effect relationship. Both depression and physical fatigue are relevant to patients' quality of life.

Little is known regarding the prevalence and course of fatigue in cancer patients after treatment has ended and no recurrence found. The present study examines fatigue in disease-free cancer patients after being treated with radiotherapy (n = 154). The following questions are addressed. First, how do patients describe their fatigue 9 months after radiotherapy and is this different from fatigue in a nonselective sample from the general population (n = 139)? Secondly, to what degree is fatigue in patients associated with sociodemographic, medical, physical and psychological factors? Finally, is it possible to predict which patients will suffer from fatigue 9 months after radiotherapy? Results indicated that fatigue in disease-free cancer patients did not differ significantly from fatigue in the general population. However, for 34% of the patients, fatigue following treatment was worse than anticipated, 39% listed fatigue as one of the three symptoms causing them most distress, 26% of patients worried about their fatigue and patients' overall quality of life was negatively related to fatigue (r = -0.46). Fatigue in disease-free patients was significantly associated with: gender, physical distress, pain rating, sleep quality, functional disability, psychological distress and depression, but not with medical (diagnosis, prognosis, co-morbidity) or treatment-related (target area, total radiation dose, fractionation) variables. The degree of fatigue, functional disability and pain before radiotherapy were the best predictors of fatigue at 9-month follow-up, explaining 30%, 3% and 4% of the variance respectively. These findings are in line with the associations found with fatigue during treatment as reported in the preceding paper in this issue. The significant associations between fatigue and both psychological and physical variables demonstrate the complex aetiology of this symptom in patients and point out the necessity of a multidisciplinary approach for its treatment.

The Multidimensional Fatigue Inventory (MFI) is a 20-item self-report instrument designed to measure fatigue. It covers the following dimensions: General Fatigue, Physical Fatigue, Mental Fatigue, Reduced Motivation and Reduced Activity. This new instrument was tested for its psychometric properties in cancer patients receiving radiotherapy, patients with the chronic fatigue syndrome, psychology students, medical students, army recruits and junior physicians. We determined the dimensional structure using confirmatory factor analyses (LISREL's unweighted least squares method). The hypothesized five-factor model appeared to fit the data in all samples tested (AGFIs > 0.93). The instrument was found to have good internal consistency, with an average Cronbach's alpha coefficient of 0.84. Construct validity was established after comparisons between and within groups, assuming differences in fatigue based on differences in circumstances and/or activity level. Convergent validity was investigated by correlating the MFI-scales with a Visual Analogue Scale measuring fatigue (0.22 < r < 0.78). Results, by and large, support the validity of the MFI.

This study aims to develop and pilot a question prompt sheet to assist esophageal cancer patients to obtain desired information in the consultation in which potentially curative esophagectomy is discussed. Whether a prompt sheet affected patients' question asking, the number and scope of topics discussed, the length of the consultation, and patients' satisfaction is investigated. Patients (n= 30) were randomized either to receive care as usual (control group) or to receive a prompt sheet (intervention group). All patients completed a baseline questionnaire, their consultations were audio-recorded and content-coded, and they received a structured telephone interview 2 days after the consultation to assess satisfaction. Patients provided with the prompt sheet marked a median of 19 questions. They asked significantly more questions as compared with patients in the control group (median of 12 vs. 8 questions). Questions mainly addressed treatment options and procedures. No differences were found with regard to consultation length and patient satisfaction. Our results suggest that providing patients with a simple, easy-to-implement tool such as a question prompt is appreciated and helps patients to ask more questions during the consultation without increasing the length of the consultation.

The number of second opinions (SO) and tertiary referrals (TR) in neurology is increasing. Previously, we showed that a day-care admission for neurological SO's and TR's often results in a new diagnosis and/or treatment advice and increases patient satisfaction. However, long-term satisfaction for these consultations has never been studied. The main purpose of this study was to investigate long-term satisfaction in these groups of patients.A 2-year follow-up study in 300 patients who had attended a day-care clinic for SO and TR. Long-term satisfaction was assessed with a questionnaire using four Visual Analogue Scale (VAS) satisfaction items (ranging 0-10). Patients were asked if they had sought further consultations for the same problem after they had consulted the day-care clinic. A model was constructed to assess predictors for seeking new consultations.Overall satisfaction decreased 2.4 (SD 2.4) points during follow-up to the same level as before the consultation. The decrease was similar in SO and TR patients. Twenty-eight per cent of the patients consulted other health-care workers. Greater satisfaction immediately after the consultation was the only predictor for not seeking additional consultations (OR 0.78, 95% CI 0.61-0.99 for every point increase on VAS).Despite a high rate of new diagnoses and advised treatments, long-term satisfaction decreased after 2 years to baseline levels. These results question the long-term efficacy of a day-care clinic to evaluate neurological second opinions and tertiary referrals.

In this paper an overview is presented on what is currently known of fatigue in cancer. Fatigue is considered to be a multi-dimensional concept, that should be measured as such. However, fatigue has been assessed mostly by single items in general symptom checklists. The few specific instruments that have been used in cancer patient populations are discussed. The majority of cancer patients, about 70%, report feelings of fatigue during radio- or chemotherapy. Follow-up results show that, at least for some diagnoses, patients remain fatigued long after treatment has ended. Somatic and psychological mechanisms that have been proposed to explain fatigue are discussed. It is argued that the significance of the results obtained on fatigue as a symptom in cancer depends on comparison with other patient and non-patient populations. Also the occurrence of a response-shift has to be considered, leading to under reporting of fatigue. Finally, possible interventions to decrease feelings of fatigue are presented.

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present.Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results.Design: Vignettes study.Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands.Patients: 810 consecutive colonoscopy patients.Intervention: A home-sent questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed.Main outcome measurements: Wish to be informed and importance of information.Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style.Limitations: Difficulty of vignettes.Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested.

Given the increased demand on genetic services, it is important to identify clients who may require relatively more extensive psychosocial support. This paper describes which client characteristics, as assessed in the first psycho-social counselling session, were associated with requiring relatively more psycho-social support (> or = 3 sessions) in the process of predictive testing for cancer. The study population consisted of 244 counselees for hereditary cancer. Data were derived from an electronic data-base, used by psycho-social workers for the systematic registration of relevant details of each counselling session. Data were analysed for two respective groups: (A) patients who had a known mutation in the family and (B) patients with an as yet unknown mutation in the family. Results show that two or more psychosocial sessions were given if the information derived from the first session indicated the client to have childhood experiences with cancer (in group A), to experience the family role and/or the psychological impact as burdensome (in both groups) or to experience the social impact as burdensome (in group B). We conclude that the first assessment by a psychosocial worker already provides valuable information on the psychological support needs of patients. These findings provide insight into possible problem areas for clients dealing with predictive genetic testing

Background: Genetic counselling for familial conditions during pregnancy may have some disadvantages, such as time pressure and induced worry. However, little is known about the reasons for and consequences of this timing of genetic counselling. Objective: The objective of this study was to provide an overview of research aimed at the counselee’s reasons for seeking genetic counselling during pregnancy and the medical-technical and procedural consequences thereof. Methods: We searched the databases Medline and PsycINFO for primary research papers, reviews and case reports, published from 1989 to June 2004. Results: No papers could be retrieved which explicitly addressed our research questions. However, 34 papers, out of a total of 399 papers, covered issues with some relevance to our research questions. Limited knowledge and alertness towards genetics and a greater apparent relevance of genetic issues during pregnancy seemed to explain, at least partly, the timing of referral during pregnancy. Literature on the consequences of this timing for the quality of the genetic counselling process appeared to be scarce. These consequences, therefore, remain unclear. Conclusion: In the literature, little attention is paid to the various aspects of the timing of genetic counselling for familial conditions during pregnancy. More research on this issue is important, with a view to improving the care of pregnant women and their children.

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 (TO), 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. (c) 2005 Elsevier Inc. All rights reserved

Reproductive genetic counseling for a familial genetic risk factor preferably takes place before conception. However, of the women with a family history of genetic conditions who attend our department of clinical genetics, about 10-20% attend for the first time during a pregnancy. The current study aims to explore patient-related factors that may affect this late timing of reproductive genetic counseling. Consecutive pregnant (n = 100) and non-pregnant (n = 84) women visiting the department of clinical genetics for a genetic risk factor which was not age related completed a questionnaire immediately prior to the consultation. The questionnaire asked for (a) background characteristics, i.e. socio-demographic, obstetric, and disease characteristics (b) cognitive factors, i.e. initiative of referral, knowledge of the risk factor involved, risk perception, worry, child wish, attitudes toward abortion, and preferred participation in decision making, and (c) reasons for the timing of the consultation and for seeking genetic counseling. Pregnant women appeared to be higher educated, considered their children more often as healthy and were less often affected themselves, as compared to non-pregnant women. They also estimated their chance of having an affected child as lower, and they worried less. Furthermore, the initiative for referral was taken less often by the pregnant woman herself and more often by a medical worker. There were no major differences between the two study groups in knowledge, perceived severity of the risk factor, child wish, attitudes toward abortion, desired participation in decision making, and reasons to seek genetic counseling. Women indicated no specific reasons for their timing of referral for reproductive genetic counseling, e.g. during vs before pregnancy. Our data suggest that this timing of referral is not influenced predominantly by the women's level of knowledge. Rather, women's estimation of genetic risks and their degree of worry, which may be in accordance with the actual risk figures, seem to play a role in seeking genetic counseling. Although further studies are required, a more active role of health care providers seems warranted if we want to prevent genetic counseling for familial genetic conditions during pregnancy as much as possible.

Cancer patients undergoing radiotherapy frequently report fatigue. However, knowledge of the importance of fatigue for these patients and of the factors associated with their fatigue is limited. The aim of the current investigation was to gain more insight into fatigue as related to radiotherapy by answering the following questions. First, how is the experience of fatigue best described? Secondly, to what extent is fatigue related to sociodemographic, medical (including treatment), physical and psychological factors? Finally, is it possible to predict which patients will suffer from fatigue after completion of radiotherapy? Patients with different types of cancer receiving radiotherapy with curative intent (n = 250) were interviewed before and within 2 weeks of completion of radiotherapy. During treatment, patients rated their fatigue at 2-weekly intervals. Results indicate a gradual increase in fatigue over the period of radiotherapy and a decrease after completion of treatment. Fatigue scores obtained after radiotherapy were only slightly, although significantly, higher than pretreatment scores. After treatment, 46% of the patients reported fatigue among the three symptoms that caused them most distress. Significant associations were found between post-treatment fatigue and diagnosis, physical distress, functional disability, quality of sleep, psychological distress and depression. No association was found between fatigue and treatment or personality characteristics. Multivariate regression analysis demonstrated that the intensity of pretreatment fatigue was the best predictor of fatigue after treatment. In view of this finding, a regression analysis was performed to gain more insight into the variables predicting pretreatment fatigue. The degree of functional disability and impaired quality of sleep were found to explain 38% of the variance in fatigue before starting radiotherapy. Fatigue in disease-free patients 9 months after treatment is described in paper (B) in this issue.

Objectives. To review current evidence for the effectiveness of smoking cessation interventions in cardiovascular patient populations. Design and materials. Studies were obtained from systematic reviews of the Cochrane Tobacco Addiction Review Group. Twelve Cochrane reviews related to secondary prevention in a variety of populations were used to extract eligible studies. Studies were eligible when they considered smokers diagnosed with symptomatic cardiovascular disease. Methods. Data concerning the comparison between the intervention of interest and a placebo or standard treatment group were derived from eligible papers. Based on these data, Absolute Risk Reduction figures were calculated to express the effectiveness of each intervention on smoking cessation. Results. We found 12 studies examining smoking cessation interventions in cardiovascular patients. Five studies reported significant results. No evidence was found for Nicotine Replacement Therapy or other pharmacology to be effective, neither for self-help materials, group, individual or telephone counseling. There is limited evidence for physician's advice and nurse-delivered interventions to be effective. Conclusions. Smoking cessation studies in cardiovascular patients are scarce. The available studies show very limited effects. The reasons for the lack of success of smoking cessation strategies in these patients remain unclear. Further research is needed to find effective cessation strategies for patients with cardiovascular diseases.