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Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer., (© 2019 American Cancer Society.)

Objective: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC)., Methods: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors., Results: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion., Conclusion: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns., Practice Implications: Doctors caring for patients at the end of life should routinely raise spiritual issues., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objective: To document the effect of a cancer specific question prompt list (QPL) on patients question asking and shared decision-making (SDM), and to evaluate the combined effect of the QPL and consultation audio recording (CAR) on patient outcomes., Method: This exploratory study compared two groups of patients receiving either a QPL or combined QPL/CAR, to a control group. Measurements included number/types of questions asked, and physician SDM behavior (OPTION score). Questionnaire data included anxiety/depression and quality of life (QoL)., Results: A total of 93 patients participated (31 Control, 30 QPL and 32 Combined). Patients in the intervention groups asked more questions concerning prognosis (p < .0001), the disease (p = .006) and quality of treatment (p < .001) than patients in the control group, but no impact was found on the OPTION score. An increase in mean consultation length was observed in the intervention groups compared to the control group (44 vs. 36 min; p = .028). Patients rated both interventions positively., Conclusion: Provision of the QPL facilitates patients to ask a broader range of questions, but does not increase physician SDM behavior., Practical Implementation: The combination of QPL and CAR seems feasible and should be tested in an implementation study following the disease trajectory., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Objective: Ethnicity and migrant status result in disparities with cancer burden and survival, with communication difficulties cited as the main barrier to access. Our research team tested a communication intervention package comprising consultation audio-recordings (ARs) and question prompt lists (QPLs) for low English-speaking (LES) patients with cancer. This study explored LES patient experiences, preferences, and recommendations regarding the communication package., Methods: Participants completed a questionnaire and qualitative interview regarding ARs and QPLs. Eligibility criteria comprised aged ≥18 years old; a consultation with an oncologist between June 1, 2015 and April 1, 2016; an Arabic, Cantonese, Greek, or Mandarin professional interpreter booked for that consultation; and randomised to receive the communication intervention., Results: Eighteen patients completed the qualitative interview and 17 completed the questionnaire. Fifteen reported listening to the AR at least once. Participants reported that QPLs and ARs provide support and assistance with remembering and understanding medical information. Both resources were seen as having applicability beyond the oncology setting in regards to improving health service delivery and continuity of care. However, patients felt that individual tailoring of the resources should be considered. Patients also found it useful to share ARs with family., Conclusions: The LES participants in this study considered the ARs and QPLs useful for most, but not all contexts. Recommendations regarding delivery and use highlight that these resources should be tailored and patient-driven. Further, patients foresaw a range of additional uses for consultation ARs within the broader healthcare context., (© 2018 John Wiley & Sons, Ltd.)

Objective: Decision-making in ductal carcinoma in situ (DCIS) is complex due to the heterogeneity of the disease. This study aimed to understand women's experience of making treatment decisions for DCIS, their information and support needs, and factors that influenced decisions., Methods: We searched six electronic databases, conference proceedings, and key authors. Two reviewers independently applied inclusion and quality criteria, and extracted findings. Thematic analysis was used to combine and summarise findings., Results: We identified six themes and 28 subthemes from 18 studies. Women with DCIS have knowledge deficits about DCIS, experience anxiety related to information given at diagnosis and the complexity of decision-making, and have misconceptions regarding risks and outcomes of treatment. Women's decisions are influenced by their understanding of risk, the clinical features of their DCIS, and the benefits and harms of treatment options. Women are dissatisfied with the decisional support available., Conclusions: Informed and shared decision-making in this complex decision setting requires clear communication of information specific to DCIS and individual's, as well as decision support for patients and clinicians., Practice Implications: This approach would educate patients and clinicians, and assist clinicians in supporting patients to an evidence-based treatment plan that aligns with individual values and pReferences., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Objective: Question prompt lists (QPLs) and consultation audio-recordings (CARs) are two communication strategies that can assist cancer patients in understanding and recalling information. We aimed to explore clinician and organisational barriers and facilitators to implementing QPLs and CARs into usual care., Methods: Semi-structured interviews with twenty clinicians and senior hospital administrators, recruited from four hospitals. Interviews were recorded, transcribed verbatim and thematic descriptive analysis was utilised., Results: CARs and QPLs are to some degree already being initiated by patients but not embedded in usual care. Systematic use should be driven by patient preference. Successful implementation will depend on minimal burden to clinical environments and feedback about patient use. CARs concerns included: medico-legal issues, ability of the CAR to be shared beyond the consultation, and recording and storage logistics within existing medical record systems. QPLs issues included: applicability of the QPLs, ensuring patients who might benefit from QPL's are able to access them, and limited use when there are other existing communication strategies., Conclusions: While CARs and QPLs are beneficial for patients, there are important individual, system and medico-legal considerations regarding usual care., Practice Implications: Identifying and addressing practical implications of CARs and QPLs prior to clinical implementation is essential., (Copyright © 2017 The Authors. Published by Elsevier B.V. All rights reserved.)

Importance: Observational studies demonstrate links between patient-centered communication, quality of life (QOL), and aggressive treatments in advanced cancer, yet few randomized clinical trials (RCTs) of communication interventions have been reported., Objective: To determine whether a combined intervention involving oncologists, patients with advanced cancer, and caregivers would promote patient-centered communication, and to estimate intervention effects on shared understanding, patient-physician relationships, QOL, and aggressive treatments in the last 30 days of life., Design, Setting, and Participants: Cluster RCT at community- and hospital-based cancer clinics in Western New York and Northern California; 38 medical oncologists (mean age 44.6 years; 11 (29%) female) and 265 community-dwelling adult patients with advanced nonhematologic cancer participated (mean age, 64.4 years, 146 [55.0%] female, 235 [89%] white; enrolled August 2012 to June 2014; followed for 3 years); 194 patients had participating caregivers., Interventions: Oncologists received individualized communication training using standardized patient instructors while patients received question prompt lists and individualized communication coaching to identify issues to address during an upcoming oncologist visit. Both interventions focused on engaging patients in consultations, responding to emotions, informing patients about prognosis and treatment choices, and balanced framing of information. Control participants received no training., Main Outcomes and Measures: The prespecified primary outcome was a composite measure of patient-centered communication coded from audio recordings of the first oncologist visit following patient coaching (intervention group) or enrollment (control). Secondary outcomes included the patient-physician relationship, shared understanding of prognosis, QOL, and aggressive treatments and hospice use in the last 30 days of life., Results: Data from 38 oncologists (19 randomized to intervention) and 265 patients (130 intervention) were analyzed. In fully adjusted models, the intervention resulted in clinically and statistically significant improvements in the primary physician-patient communication end point (adjusted intervention effect, 0.34; 95% CI, 0.06-0.62; P = .02). Differences in secondary outcomes were not statistically significant., Conclusions and Relevance: A combined intervention that included oncologist communication training and coaching for patients with advanced cancer was effective in improving patient-centered communication but did not affect secondary outcomes., Trial Registration: clinicaltrials.gov Identifier: NCT01485627.

Background: Of the available treatment options for attention-deficit/hyperactivity disorder (ADHD), the use of medications remains the most controversial and it is often difficult for parents to make decisions about treatment. Provision of relevant, reliable information about treatment during consultations may help address parents' concerns about treatment options. Question prompt lists are structured lists of disease and treatment-specific questions intended for use by patients during consultations to encourage communication with clinicians. They may prove useful in empowering parents to ask questions during consultations and to make informed decisions about treatments for ADHD., Objectives: To evaluate the acceptability and usefulness of a question prompt list (QPL) for attention-deficit/hyperactivity disorder (ADHD) during consultations between parents of diagnosed children and their pediatricians., Methods: Parents of children recently diagnosed with ADHD (n = 17) received a copy of the QPL 7 days before their child's appointment and completed questionnaires before and after their consultations to elicit: satisfaction with the consultation and QPL; situational anxiety levels; achievement of decision-making and information preferences. Pediatricians (n = 3) completed questionnaires after each consultation to determine the impact of the QPL on consultation flow and to ascertain their willingness to incorporate the QPL into their practice., Results: All parents reported that the QPL helped them to ask more questions, was easy to understand and would be useful to them in future. After receiving the QPL and seeing the pediatrician, parents' anxiety decreased significantly. All described their decision-making roles as 'just right' and were satisfied with the information obtained during their consultations. All pediatricians agreed that the QPL was helpful for parents, made communication easier, and helped parents to initiate discussion about difficult topics. The QPL was not found to impede flow of the consultation. All agreed QPL provision was feasible as part of routine clinical care., Conclusions: The QPL received strong support from parents and pediatricians and may be a useful tool in facilitating communication and shared decision-making in this setting. The findings warrant further investigation in a larger randomized controlled study., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Objective: Spiritual history taking by physicians is recommended as part of palliative care. Nevertheless, very few studies have explored the way that experienced physicians undertake this task., Method: Using grounded theory, semistructured interviews were conducted with 23 physicians who had experience in caring for advanced cancer patients. They were asked to describe the way they discuss spirituality with their patients., Results: We have described a delicate, skilled, tailored process whereby physicians create a space in which patients feel safe enough to discuss intimate topics. Six themes were identified: (1) developing the self: physicians describe the need to understand and be secure in one's own spirituality and be comfortable with one's own mortality before being able to discuss spirituality; (2) developing one's attitude: awareness of the importance of spirituality in the life of a patient, and the need to respect each patient's beliefs is a prerequisite; (3) experienced physicians wait for the patient to give them an indication that they are ready to discuss spiritual issues and follow their lead; (4) what makes it easier: spiritual discussion is easier when doctor and patient share spiritual and cultural backgrounds, and the patient needs to be physically comfortable and willing to talk; (5) what makes it harder: experienced physicians know that they will find it difficult to discuss spirituality when they are rushed and when they identify too closely with a patient's struggles; and (6) an important and effective intervention: exploration of patient spirituality improves care and enhances coping., Significance of Results: A delicate, skilled, tailored process has been described whereby doctors endeavor to create a space in which patients feel sufficiently safe to discuss intimate topics.

Objective: Little is known about how family are involved in cancer treatment decision-making. This study aimed to qualitatively explore Australian oncology clinicians', patients', and family members' attitudes towards, and experiences of, family involvement in decision-making., Methods: Semi-structured interviews were conducted with 30 cancer patients, 33 family members, 10 oncology nurses and 11 oncologists. Framework analysis methods were used., Results: Three main themes were uncovered: (i) how family are involved in the decision-making process: specific behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family involvement in the decision-making process: balancing patient authority with the rights of the family; and (iii) factors influencing family involvement: patient, family, cultural, relationship, and decision., Conclusion: This study highlighted many specific behaviours of family throughout the decision-making process, the complex participant attitudes toward retaining patient authority whilst including the family, and insight into influencing factors. These findings will inform a conceptual framework describing family involvement in decision-making., Practice Implications: Clinicians could ascertain participant preferences and remain open to the varying forms of family involvement in decision-making. Given the important role of family in the decision-making process, family inclusive consultation strategies are needed., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Background: Family members (FMs) regularly attend oncology consultations. However, limited studies have assessed actual behaviours of oncologists, patients and FMs - particularly during decision-making. The current study aimed the following: (i) to rigorously develop a family (kin) interaction coding system (KINcode) capturing communication and decision-making behaviours of FMs and family-relevant behaviours of oncologists and patients and (ii) to apply KINcode to initial oncology consultations., Methods: The 80-item KINcode system was developed and applied to 72 transcripts of audiotaped medical/radiation oncology consultations including an FM, collected as part of two previous studies., Results: The role of the FM varied considerably within the one encounter, with 33% of FMs assuming three or more roles across the four consultation stages. Whilst most FMs asked treatment decision questions (71%), a minority engaged in other behaviours such as prompting patient questions (4%) or providing information relevant to the decision to the oncologist (18%). Although oncologists rarely initiated interaction with FMs such as in rapport building (18%) or asking FMs questions (25%), they were typically fully responsive to FM questions (90%). Many patients asked their FM a question (42%), but few elicited the FM's decision preferences (4%)., Conclusions: This study provides novel insights into the complex nature of family involvement. The findings highlight potentially positive FM-focused consultation behaviours such as oncologist responsiveness to family questions and potential areas for improvement such as rapport building, invitation of questions and validation of the family's role. Family-specific communication skills training should be considered in medical student and professional education settings. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Background: Informed consent is required for both standard cancer treatments and experimental cancer treatments in a clinical trial. Effective and sensitive physician-patient communication about informed consent is difficult to achieve. Our aim was to train doctors in clear, collaborative and ethical communication about informed consent and evaluate the impact of training on doctor behaviour, stress and satisfaction., Participants and Methods: Participants were 21 oncologists from 10 Australian/New Zealand (ANZ) centres and 41 oncologists from 10 Swiss/German/Austrian (SGA) centres. Oncologists were randomized to participate in a 1-day workshop or not. Patients were recruited before and after the training. Doctors were asked to submit 1-2 audiotaped consultations before and after training. Doctors completed outcome measures before and after completing the post-training cohort recruitment., Results: Ninety-five consultation interactions were audiotaped. Doctors strongly endorsed the training. ANZ intervention doctors demonstrated a significant increase in collaborative communication (P = 0.03). There was no effect of training on other doctor behaviours. Trained doctors did not demonstrate reduced stress and burnout. Patient outcomes are presented elsewhere., Conclusions: Training can improve some aspects of the process of obtaining informed consent. Methods to increase the impact of training are required and may include longer training and more intensive follow-up., (© 2014 John Wiley & Sons Ltd.)

Objective: Consistent use of imatinib is critical for treatment success in chronic myeloid leukemia, yet perfect adherence to the prescribed clinical regimen is reported to be as low as 14%. This study aimed to understand patients' experiences of chronic myeloid leukemia with a qualitative approach, including identified facilitators and barriers to adherence, drawing on patients' and health professionals' perspectives, recording comments made by patients and health professionals involved with the same treatment team., Method: We recruited patients with chronic myeloid leukemia prescribed imatinib therapy and health professionals involved in their treatment from a specialized cancer center. Semi-structured qualitative interviews were recorded, transcribed, and manually analyzed using interpretive phenomenological analysis. Recruitment ceased upon saturation, with 16 patients and 10 health professionals (hematologists n = 4, nurses n = 3, pharmacists n = 3)., Results: Twelve patients reported at least one instance of nonadherence. Reasons for unintentional nonadherence included forgetfulness related to variations of routine and doctor-patient communication issues. Reasons for intentional nonadherence included desires to reduce dose-dependent side effects and insufficient support. Patients who reported higher nonadherence rates felt complacent following periods of sustained disease control or had received conflicting advice regarding nonadherence. Health professionals had difficulty in accurately evaluating medication adherence due to a lack of reliable measures, utilizing patient self-report and manifestations of suboptimal disease control to guide assessments., Significance of Results: Adherence issues persist throughout the course of treatment. While high patient-reported nonadherence rates were recorded, health professionals were often unaware of the complex causes, compounded by an inadequacy of adherence assessment tools. Some patients reported nonadherence events because of insufficient education or lack of access to prompt medical guidance. These issues should be addressed to improve clinical practice.

Context: Nondisclosure of cancer diagnosis is common in many Eastern countries. Consequently, immigrant families often approach oncologists with requests for nondisclosure in Western countries., Aims: To explore differences in the attitudes and practices of Western-born and nonWestern born oncologists in Australia when faced with a nondisclosure request., Settings and Design: Using a cross-sectional design, oncologists were interviewed over the telephone., Methods: Using the snowball method, 14 Australian (Western = 9, non-Western = 5) oncologists were recruited. Oncologists participated in a semi-structured interview exploring their experiences of, and response to, a request for nondisclosure, and their perceptions of how their cultural background influenced these attitudes and responses., Analysis: The interviews were transcribed and analyzed using interpretative phenomenological analysis., Results: Six main themes emerged from the study: (1) Barriers to truthful communication, (2) an ethical and moral dilemma, (3) high costs of nondisclosure, (4) cultural influences on interpretation and understanding of requests for nondisclosure, (5) emotional impact of bad news on patients, families and oncologists, and (6) truthful disclosure as a gentle balancing act., Conclusions: All oncologists felt that the family request for nondisclosure was difficult, with many cultural and emotional nuances to take into consideration. Some immigrant Australian oncologists who had a similar cultural background as the patient/family, felt they could better understand the desire for nondisclosure. Irrespective of their cultural background, all oncologists acknowledged that breaking bad news had to be done in a gentle, gradual manner. The study suggests a need to develop a culturally sensitive cancer communication model.

Background: Being at peace is important for the quality of life of dying cancer patients, but its features, and the role of the doctor in facilitating peace, are unclear., Aim: We sought to understand the features of a peaceful patient, and patients' preferences regarding the role of the doctor in facilitating a sense of peace., Design: A grounded theory approach was used with semi-structured interviews. Patients were asked about the things that gave their life meaning and a sense of peace and how the doctor could support their spiritual well-being. Patients were also questioned about their concerns for their future., Setting/participants: In total, 15 cancer patients with advanced disease were interviewed in a variety of care settings., Results: Patients were observed to be along a spectrum between having peace and not having peace. Features of the two extreme positions are described. Doctors could facilitate peace by developing a good relationship with cancer patients and supplying clear and honest information about what patients could expect as they approached their death., Conclusion: Spiritual well-being in cancer patients can be promoted by communication from doctors regarding prognosis, which allows them time to prepare for death, and recognition of their fears. However, acceptance of death does not always lead to the patient experiencing peace., (© The Author(s) 2014.)

Purpose: Spiritual care is reported as important for cancer patients, but the role of the doctor in its provision is unclear. We undertook to understand the nature of spiritual support for Australian cancer patients and their preferences regarding spiritual care from doctors., Methods: Using grounded theory, semistructured interviews were conducted with 15 cancer patients with advanced disease in a variety of care settings. Patients were asked about the source of their spiritual support and how they would like their doctors to engage with them on spiritual issues., Results: Three themes were identified as follows: (1) sources of spiritual support which helped patients cope with illness and meet spiritual needs, (2) facilitators of spiritual support, and (3) role of the doctor in spiritual support. Regardless of religious background, the majority of patients wanted their doctor to ask about their source of spiritual support and facilitate access to it. Patients did not want spiritual guidance from their doctors, but wanted to be treated holistically and to have a good relationship, which allowed them to discuss their fears. Doctors' understanding of the spiritual dimension of the patient was part of this., Conclusions: Spirituality is a universal phenomenon. Patients in a secular society want their doctor to take an interest in their spiritual support and facilitate access to it during illness.

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 (β = 0.17, 95% CI 0.08, 0.27; P < 0.001), honesty (β = 0.30, 95% CI 0.20, 0.40; P < 0.001), as well as caring (β = 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.

Despite a high prevalence of pain and ongoing effort to understand and reduce pain, studies show that there remains a considerable unmet need for pain relief and management. In part, this may be due to patient's not adhering to treatment recommendations. Models such the health belief model, self-regulation theory, and the theory of planned behavior suggest two key factors in promoting adherence: (1) good health care provider-patient communication and (2) interventions that are tailored to individuals' reasons for non-adherence. Hence, communication skills that express a nonjudgmental approach, allow open exploration of patient beliefs and concerns, and use a negotiating approach that fosters shared decision making are crucial. Randomized, controlled trials of brief communication skills training have shown improved outcomes in primary care settings for patients with fibromyalgia and acute pain. Thus, although treatment of chronic pain is challenging, good communication between health providers and patients can promote adherence and improve outcomes., (Copyright © 2013 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.)

Objective: To systematically review quantitative and qualitative studies exploring physician-adult patient-adult companion (triadic) communication and/or decision-making within all medical encounters., Methods: Studies were identified via database searches and reference lists. One author assessed eligibility of studies, verified by two co-authors. Data were extracted by one author and cross-checked for accuracy. Two authors assessed the quality of included articles using standardized criteria., Results: Of the 8409 titles identified, 52 studies were included. Summary statements and tables were developed for each of five identified themes. Results indicated companions regularly attended consultations, were frequently perceived as helpful, and assumed a variety of roles. However, their involvement often raised challenges. Patients with increased need were more often accompanied. Some companion behaviours were felt to be more helpful (e.g. informational support) and less helpful (e.g. dominating/demanding behaviours), and preferences for involvement varied widely., Conclusion: Triadic communication in medical encounters can be helpful but challenging. Based on analysis of included studies, preliminary strategies for health professionals are proposed., Practice Implications: Preliminary strategies for health professionals include (i) encourage/involve companions, (ii) highlight helpful companion behaviours, (iii) clarify and agree upon role preferences of patient/companions. Future studies should develop and evaluate specific strategies for optimizing triadic consultations., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Background: The purpose was to investigate patient-doctor agreement on clinical trial discussion cross-culturally., Methods: In the International Breast Cancer Study Group Trial 33-03 on shared decision-making for early breast cancer in Australian/New Zealand (ANZ) and Swiss/German/Austrian (SGA) centers, doctor and patient characteristics plus doctor stress and burnout were assessed. Within 2 weeks post-consultation about treatment options, the doctor and patient reported independently, whether a trial was discussed. Odds ratios of agreement for covariables were estimated by generalized estimating equations for each language cohort, with doctor as a random effect., Results: In ANZ, 21 doctors and 339 patients were eligible; in SGA, 41 doctors and 427 patients. In cases where the doctor indicated 'no trial discussed', 82% of both ANZ and SGA patients agreed; if the doctor indicated 'trial discussed', 50% of ANZ and 38% of SGA patients agreed, respectively. Factors associated with higher agreement were: low tumor grade and fewer patients recruited into clinical trials in SGA; public institution, patient born in ANZ (versus other), higher doctor depersonalization and personal accomplishment in ANZ., Conclusion: There is discordance between oncologists and their patients regarding clinical trial discussion, particularly when the doctor indicates that a trial was discussed. Factors contributing to this agreement vary by culture.

Objective: A Question Prompt List (QPL) is a proven, simple intervention to aid patients to be active participants in consultations with their physicians by asking questions. We aimed to further develop and test the efficacy of a targeted QPL for clinical trials (QPL-CT)., Methods: Breast, Lung and Genitourinary cancer patients who were facing a discussion about a therapeutic clinical trial completed short pre- and post-consultation questionnaires and used the QPL-CT in their discussions with their oncologists., Results: 30 participants were recruited from 6 oncologists. All QPL-CT questions were selected by at least one-third of participants. Participants mostly wanted and asked questions about personal trial benefit. Oncologists provided information about personal benefit to varying degrees, thus patients did not ask some questions. Patients were still left with some unasked and unanswered questions., Conclusion: The QPL-CT has potential as a simple, inexpensive intervention to aid such communication. Further investigation is needed to demonstrate the efficacy of the QPL-CT in improving cancer patient outcomes., Practice Implications: These preliminary finding suggest that important areas of clinical trials are overlooked in clinical consultations. The QPL-CT may be an effective method to encourage oncologists to endorse patient question asking about clinical trials and prompt patient questions., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objectives: Migrant patients comprise a significant proportion of Western oncologists' clientele. Although previous research has found that barriers exist in the communication between ethnically diverse patients and health professionals, little is known about their personal preferences for communication and information, or the concordance of views held between patients and family members., Methods: Seventy-three patients (31 Anglo-Australians, and 20 Chinese, 11 Arabic and 11 Greek migrants) and 65 relatives (25 Anglo-Australians, and 23 Chinese, 11 Arabic and 7 Greek migrants) were recruited through nine Sydney oncology clinics. Following prognostic consultations, participants were interviewed in their preferred language about their experiences and ideals regarding information and communication with oncologists. Interviews were audio-taped, translated and transcribed, and then thematically analysed using N-Vivo software., Results: Consistency was found in patient preferences, regardless of ethnicity, in that almost all patients preferred prognostic information to be delivered in a caring and personalised manner from an authoritative oncologist. Contrary to previous research, migrant patients often expressed a desire for prognostic disclosure. Discordance was found between migrant patients and their families. These families displayed traditional non-Western preferences of non-disclosure of prognosis and wanted to actively influence consultations by meeting with oncologists separately beforehand and directing the oncologists on what and how information should be conveyed to patients., Conclusions: Many of the communication issues facing patients in the metastatic cancer setting are shared amongst Anglo-Australian and migrant patients alike. Understanding the dynamics within migrant families is also an important component in providing culturally sensitive communication. Future directions for research are provided., (Copyright © 2011 John Wiley & Sons, Ltd.)

Objective: Question Prompt Lists (QPLs) have demonstrated significant promise in facilitating communication in general, surgical and palliative oncology settings yet have not been tested in the oncology clinical trial setting. We aimed to develop a targeted QPL for Clinical Trials (QPL-CT)., Methods: Breast, lung, and genitourinary cancer patients who either had (trial experienced) or had not (trial naive) participated in a clinical trial joined focus groups to help develop and explore the acceptability of a QPL-CT. Clinicians also participated in separated focus groups. Focus groups were audio-recorded and transcribed. We explored patients' trial information needs and views about the utility of the QPL-CT., Results: Patients focused on four trial information needs: understanding foundational information, conflict of interest issues and financial implications of trial participation. Of note, experienced patients need to personalize foundational information., Conclusion: Patient information needs varied considerably and were influenced by trial experience. Patients valued the QPL-CT as an aid to gathering new trial information and ensuring that their information needs were met., Practice Implications: Physicians need to carefully elicit patient information needs and tailor trial information to meet these needs. The QPL-CT, may be of great benefit during clinical trial discussions., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Objective: To assess the relative impact of cognitive and emotional aspects of shared decision making (SDM) on patient outcomes., Methods: Cognitive and emotional aspects of SDM in consultations between 20 oncologists and 55 early breast cancer patients were coded using the Observing Patient Involvement (OPTION) scale and the Response to Emotional Cues and Concerns (RECC) coding system, plus blocking and facilitating behaviour scales. Patient outcomes including anxiety, decisional conflict, and satisfaction with: (i) the decision, (ii) the consultation, and (iii) doctor SDM skills, were assessed. Relationships between cognitive and emotional aspects of SDM, and patient outcomes were examined using hierarchical regression., Results: The OPTION score predicted satisfaction with doctor SDM skills 2 weeks post-consultation (p=.010), and with the treatment decision 4 months post-consultation (p=.004). Emotional blocking predicted decisional conflict (p=.039), while the number of emotional cues emitted (p=.003), and the degree of empathy provided (p=.011), predicted post-consultation anxiety., Conclusion: Cognitive and emotional aspects of SDM in oncology consultations have different effects on various patient outcomes., Practice Implications: It is important that doctors focus on both sharing decisions and managing emotions in consultations. Communication skills training addressing both these areas may be an effective way to improve diverse patient outcomes., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Objective: There is little information about the accuracy of patient perceptions of their life expectancy. Here, we compare patient perceptions of their outlook and their oncologist's estimates of life expectancy to actual survival., Methods: The Unmet Needs Study recruited patients with metastatic cancer. Oncologists were asked to estimate patient survival as: (1) weeks; (2) months; (3) <1 year; (4)<2 years; and (5) >2 years. Patients were asked to estimate their outlook on a numerical scale from 1-7. Patient and oncologist estimates were compared with actual survival., Results: Complete survival data were available for 50 patients: median age 63.5 years; 48% male; tumor types: 32% colorectal, 24% lung, 10% upper gastrointestinal cancer, 12% unknown primary; and median survival 6.8 months. The oncologists were 32% accurate in predicting survival and overestimated survival 42% of the time (weighted kappa=0.34). The correlation between self-reported patient outlook and survival was modest (Spearman's rho=0.36, p=0.01). The median survival for categories of outlook of 1-3, 4-5, and 6-7 were 4.4, 5.4, and 14.8 months, respectively (p=0.01). Overseas-born patient was the only independent predictor for the oncologists' accurate estimates (p=0.01)., Conclusions: Oncologists were relatively poor at predicting survival and tended to be optimistic in their prognostication. The probability of survival significantly decreased with worse self-reported patient outlook., (Copyright © 2010 John Wiley & Sons, Ltd.)

Objective: The current study aimed to (1) describe communication patterns between oncologists and breast cancer patients regarding the use of complementary and alternative medicine (CAM) and (2) assess the relationship between CAM discussions and anxiety levels., Methods: Interaction analysis of audiotaped initial consultations of 102 early-stage breast cancer patients with Australian and New Zealand oncologists was carried out. Preconsultation and postconsultation anxiety levels were assessed using the State-Trait Anxiety Inventory., Results: At least 1 instance of CAM discussion was found in 24 of the 102 consultations (24%). CAM discussions were mainly patient initiated (73%). The most common doctor's response to a patient's mention of CAM was encouragement (38%), although 23% of CAM references elicited a discouraging comment, and 20% were ignored. No patient demographics were significantly associated with CAM discussion. Patients who discussed CAM reported higher preconsultation and postconsultation anxiety levels than those who did not discuss CAM., Conclusions: CAM discussions during initial consultations between early-stage breast cancer patients and oncologists appear to be limited and linked with higher patient anxiety before and after the consultation. These findings indicate that doctors require further education about CAM therapies and supplements as well as guidance in how to raise and effectively discuss CAM issues with concern for their safety while balancing respect for the patients' beliefs.

The purpose of this survey was to examine patient-doctor communication about the use of complementary and alternative medicine (CAM) by adult patients with cancer and compare patients' satisfaction with the consultation between patients who had and those who had not discussed the use of CAM with their doctors. Oncologists from three hospitals screened patients for eligibility. Eligible patients were mailed a letter of invitation with a questionnaire (N = 1,323). Three hundred eighty-one questionnaires were returned. Sixty-five percent of cancer patients used at least one form of CAM. Use of CAM was not discussed with the oncologist by 55% of respondents using biologically based CAM and by 80% of those using non-biologically based CAM since the diagnosis of cancer. Patients who discussed the use of biologic CAM with their oncologists were more satisfied with the consultation than those who had not (p = .027), whereas there were no significant differences between patients who discussed or did not discuss use of non-biologically based CAM (p = .102). A substantial proportion of cancer patients do not discuss the use of CAM with their oncologists. It is important to improve patient-doctor communication about the use of CAM to increase patients' satisfaction with the oncology consultation.

Objective: The current study aimed to evaluate three coding systems which have been used to assess shared decision making in oncology consultations (OPTION, Decision Support Analysis Tool (DSAT) and Decision Analysis System for Oncology (DAS-O)): (i) comparing their ability to identify competencies of shared decision making, and (ii) determining their ability to predict patient outcomes in a single data set., Method: Twenty oncologists from Australia and New Zealand participated in the IBCSG Trial 33-03. The consultations of 55 women with early stage breast cancer were audio-taped, transcribed and then coded using the OPTION, DAS-O and DSAT coding systems by three different raters. Women completed the questionnaires 2 weeks and 4 months after their consultation., Results: DAS-O was strongly correlated with OPTION (r=0.73). DSAT was moderately correlated with DAS-O and OPTION (r<0.6). Decisional satisfaction and satisfaction with doctor SDM skills were significantly correlated with OPTION (r=0.39 and 0.42 respectively) and the latter variable was correlated with DAS-O (r=0.40). These relationships persisted in multiple linear regression analyses., Conclusions: OPTION may be the most efficient and sensitive coding system for research purposes; however, DSAT appeared to document behaviours reducing decisional conflict and both DSAT and DAS-O offer more detailed feedback to doctors., Practice Implications: Optimal coding system will depend on research goals and training purposes., (Copyright 2009 Elsevier Ireland Ltd. All rights reserved.)

This study provides an analysis of the structure of the initial cancer consultation, the consultation styles of medical and radiation oncologists, and their effect on patient outcomes. One hundred and fifty-five cancer patients attending their first consultation with either a medical or radiation oncologist were audiotaped and the transcripts were analysed using the Cancode computer interaction analysis system. Findings revealed that medical oncologists allowed patients and their families more input into the consultation and were rated as warmer and more patient-centred compared with radiation oncologists. However, radiation oncologists spent a longer period discussing, and were more likely to bring up, social support issues with patients. Both medical and radiation oncologists varied their consultation style according to the patient's gender, age, anxiety levels, prognosis, and education. Patients seeing an oncologist who was rated as warmer and discussed a greater number of psychosocial issues had better psychological adjustment and reduced anxiety after consultation. These findings provide current evidence that may be used to inform improvements of communication skills training for oncologists and highlight the need for future communication research to separately consider oncologists from different disciplines.

Purpose: Psychological morbidity in cancer patients is common, but often undetected and untreated. We developed a communication skills training (CST) program targeting this issue, and evaluated its impact on doctor behaviour., Patients and Methods: Thirty of 35 oncologists from six teaching hospitals in six Australian cities, participated. The CST was a 1.5-day intensive face-to-face workshop incorporating presentation of principles, a DVD modelling ideal behaviour and role-play practice, followed by four 1.5 h monthly video-conferences incorporating role-play of doctor-generated scenarios. Doctors were randomized to receive the CST or not. Simulated patient interviews were videotaped and coded at baseline, after CST and 6 months later. Doctors completed questionnaires assessing stress and burnout at the same time points., Results: Doctors in the intervention group displayed more creating environment and fewer blocking behaviours at both follow-ups; however, these differences did not reach statistical significance. Intervention doctors valued the training highly, but did not report substantial reductions in stress and burnout., Conclusions: This short training programme demonstrated a positive effect on aspects of doctor behaviour. Video-conferencing after a short training course may be an effective strategy for delivering CST., ((c) 2007 John Wiley & Sons, Ltd)

Background: The aim was to obtain the views of health professionals and patients about the concept of involving breast cancer patients in the multidisciplinary (MD) treatment planning meeting., Methods: Breast cancer surgeons, nurses, oncologists, and patient advocates completed a mailed questionnaire., Results: The majority of breast cancer health professionals and patient advocates support shared decision-making (58%-62%). However, less than a third of surgeons (32%), medical (25%), and radiation oncologists (24%) were supportive of involving women in the MD treatment planning meeting. In contrast, 93% of breast cancer advocates and 73% of breast cancer nurses were supportive of this approach. Patient advocates were significantly more in favor than all other groups (chi(2) = 148.8, df = 4, P < .001). The common reasons for supporting patient involvement included that it would lead to patients being more informed and empowered, provide them with an opportunity to ask questions, facilitate decision-making, and improve communication between the patient and the medical team. Health professionals stated that attendance would make patients anxious and that they would have to modify their medical language. Suggestions about how to manage patient involvement included the patient being supported by a breast nurse and pre-education before the meeting. Patient advocates were significantly more willing to participate in a randomized controlled trial of this process compared with all other groups. (chi(2) = 155.15, df = 4, P < .001)., Conclusions: Despite health professional's reservations, patient advocates were highly supportive of including women in the MD meeting. Such a high demand justifies consideration of this option.

The early detection of pre-cancerous cervical conditions has risen dramatically, prompting more in-depth investigations regarding psychological implications inherent within the diagnosis and treatment of this condition. This study aimed to identify factors that influence women's experience of diagnosis and treatment of cervical abnormalities and factors that facilitate positive adjustment. Using a semi-structured telephone interview, we interviewed 21 women (age 24-54) treated at a colposcopy clinic. Systematic recruitment of women with varying degrees of cervical abnormality (CIN 1-3) and time since treatment was undertaken to ensure representation of all relevant experiences and allow the identification of long-term factors. Coding of audio-taped, transcribed interviews and searching for themes was achieved by using NUD*IST software. The results identified uncertainty, trust and communication as the key factors for women following diagnosis and treatment. The primary concern following diagnosis was related to cancer but changed to a more prominent concern with future reproductive issues in the post-treatment period. The majority of women acknowledged the importance of the doctor's empathic communication style. These findings have important implications for future studies and clinical practice., (Copyright 2006 John Wiley & Sons, Ltd.)

Introduction: Clinical trials have come to be regarded as the gold standard for treatment evaluation. However, many doctors and their patients experience difficulties when discussing trial participation, leading to poor accrual to trials and questionable quality of informed consent. We have previously developed a communication skills training program based on a typology for ethical communication about Phase II and III clinical trials within four categories. The training program consisted of a 1 day experiential workshop that included didactic teaching, exemplary video and role play. The aim of this study was to evaluate the effectiveness of the communication skills training workshop., Method: Oncologists were recruited from three major teaching hospitals conducting oncology outpatient clinics in three Australian capital cities. Ten oncologists and 90 of their adult cancer patients who were eligible for a Phase II or III clinical trial participated. Ninety informed consent consultations were audiotaped before (n = 59) and after (n = 31) training, and fully transcribed. The presence or absence of each domain component was coded and these were summed within categories. A coding manual was produced which enabled standardization of the coding procedure. Patients completed questionnaires before and after the consultation, and doctors completed a short measure of satisfaction after the consultation., Results: Doctors increased their use of some aspects of shared decision-making behavior (t(87) = -1.945, p = 0.05) and described some aspects of essential ethical/clinical information more commonly. In addition they used less coercive behaviors (z = -1.976, p = 0.048). However, they did not provide more clinical information or structure their consultations in the recommended fashion. Patients in the post-training cohort reported more positive attitudes to clinical trials, but other outcomes were not affected by the intervention., Conclusions: This short training programme demonstrated limited success in improving the oncologist's communication skills when gaining informed consent. A larger randomized controlled trial of extended training is now underway., (Copyright 2006 John Wiley & Sons, Ltd.)

Goals of Work: Although there are guidelines regarding how conversations with patients about prognosis in life-limiting illness should occur, there are little data about what doctors actually say. This study was designed to qualitatively analyze the language that oncologists and cancer patients use when talking about death., Subjects and Methods: We recruited 29 adults who had incurable forms of cancer, were scheduled for a first-time visit with one of six oncologists affiliated with a teaching hospital in Australia, and consented to having their visit audiotaped and transcribed. Using content analytic techniques, we coded various features of language usage., Main Results: Of the 29 visits, 23 (79.3%) included prognostic utterances about treatment-related and disease-related outcomes. In 12 (52.2%) of these 23 visits, explicit language about death ("terminal," variations of "death") was used. It was most commonly used by the oncologist after the physical examination, but it was sometimes used by patients or their kin, usually before the examination and involving emotional questioning about the patient's future. In all 23 (100%) visits, implicit language (euphemistic or indirect talk) was used in discussing death and focused on an anticipated life span (mentioned in 87.0% of visits), estimated time frame (69.6%), or projected survival (47.8%)., Conclusions: Instead of using the word "death," most participants used some alternative phrase, including implicit language. Although oncologists are more likely than patients and their kin to use explicit language in discussing death, the oncologists tend to couple it with implicit language, possibly to mitigate the message effects.

Background: Establishing trust between a patient and his or her surgeon is of paramount importance. The aim of this study was to assess the relative importance of the 'attributes of trust' between surgeon and patient with colorectal cancer., Methods: A discrete-choice questionnaire was conducted with 60 men and 43 women who had completed primary treatment for colorectal cancer in two teaching hospitals in Sydney, Australia., Results: Forty-seven of the 103 patients based their choice of surgical management on a single attribute and the remainder were willing to trade between different attributes. In order of importance, patients based their choice of surgical management on specialty training (beta coefficient = 0.83), surgeon's communication (beta = 0.82), type of hospital (beta = 0.72) and who decides treatment (beta = 0.01). Patients who were vigilant in their decision-making style and those who did not have tertiary education were more likely to change their preferences in the repeat interview., Conclusion: Clinicians may have a better chance of meeting a patient's expectations about the process of care if they assess the patient's desire for knowledge and give those who do not have tertiary education more time to assimilate information about their treatment., (Copyright (c) 2005 British Journal of Surgery Society Ltd. Published by John Wiley & Sons, Ltd.)

This multicenter study aimed to assess (i) whether individual clinical geneticists and genetic counselors vary in their communication skills and (ii) whether this variation in communication impacts on patient outcomes, such as anxiety, depression, genetics knowledge, and satisfaction. One hundred and fifty women from high-risk breast cancer families attending their first genetic counseling consultation completed pre and post-consultation self-report questionnaires. The consultations were audiotaped and transcribed verbatim. Univariate analyses showed highly significant differences between individual clinical geneticists and genetic counselors in: facilitating understanding (p < or = 0.001); facilitating active involvement (p < or = 0.001); facilitating partnership building (p = 0.003); addressing emotional concerns (p < or = 0.001); and discussing prophylactic mastectomy (p = 0.017). Multivariate linear regressions showed that this variation in communication resulted in a greater change in patient's depression 4 weeks after the counseling session (p = 0.017). These findings suggest clinical geneticists and genetic counselors have achieved some standardization in communicating information, but showed diversity in their facilitation skills. Communication skills may be a useful area to explore further in this field.

Cancode is a computerized interaction analysis system developed for cancer consultations. This paper assesses its reliability and validity, and compares the use of audio versus video tape; by assessing 30 consultations between an actor and 10 oncologists. Weighted Kappa inter- and intra-rater scores ranged from 0.5 to 1.0 and 0.58-1.0, respectively, and use of video tape did not alter verbal coding. Factor analysis of verbal codes revealed two factors, 'verbal control' and 'verbal support'. Verbal and non-verbal doctor behavior differed by patient type ('verbal support' P = 0.007, 'verbal control' P = 0.004, 'Responsiveness' P = 0.000, and 'Immediacy' P = 0.000). Inter-doctor variation was noted for 'verbal support' (P = 0.000) and 'Relaxation' (P = 0.000). 'Responsiveness' was negatively correlated with 'verbal support' (-0.58) and 'verbal control' (-0.65). Cancode is reliable, valid and sensitive to doctors behavioral changes. For a more passive patient, the doctor may switch from a 'cure' to 'care' oriented consult, responding to psycho-social instead of informational needs.

Purpose: This study evaluated a cancer consultation preparation package (CCPP) designed to facilitate patient involvement in the oncology consultation., Patients and Methods: A total of 164 cancer patients (67% response rate) were randomly assigned to receive the CCPP or a control booklet at least 48 hours before their first oncology appointment. The CCPP included a question prompt sheet, booklets on clinical decision making and patient rights, and an introduction to the clinic. The control booklet contained only the introduction to the clinic. Physicians were blinded to which intervention patients received. Patients completed questionnaires immediately after the consultation and 1 month later. Consultations were audiotaped, transcribed verbatim, and coded., Results: All but one patient read the information. Before the consultation, intervention patients were significantly more anxious than were controls (mean, 42 v 38; P = .04); however anxiety was equivalent at follow-up. The CCPP was reported as being significantly more useful to family members than the control booklet (P = .004). Patients receiving the intervention asked significantly more questions (11 v seven questions; P = .005), tended to interrupt the physician more (1.01 v 0.71 interruptions; P = .08), and challenged information significantly more often (twice v once; P = .05). Patients receiving the CCPP were less likely to achieve their preferred decision making style (22%) than were controls (35%; P = .06)., Conclusion: This CCPP influences patients' consultation behavior and does not increase anxiety in the long-term. However, this intervention, without physician endorsement, reduced the percentage of patients whose preferred involvement in decision making was achieved.

Clinical trials have come to be regarded as the gold standard for treatment evaluation. However, many doctors and their patients experience difficulties when discussing trials, leading to poor accrual to trials and questionable quality of informed consent. We have previously developed a typology for ethical communication about Phase II and III clinical trials within four domains: (a) shared decision making, (b) sequencing information, (c) type and clarity of information, and (d) disclosure/coercion. The aim of this study was to compare current clinical practice when seeking informed consent with this typology. Fifty-nine consultations in which 10 participating oncologists sought informed consent were audiotaped. Verbatim transcripts were analysed using a coding system to (a) identify the presence or absence of aspects of the four domains and (b) rate the quality of aspects of two domains: (i) shared decision-making and (ii) type and clarity of information. Oncologists rarely addressed aspects of shared decision-making, other than offering to delay a treatment decision (78%). Moreover, many of these discussions scored poorly with respect to ideal content. The oncologists were rarely consistent with the sequence of information provision. A general rationale for randomising was only described in 46% of consultations. In almost one third of the consultations (28.8%) doctors made implicit statements favouring one option over another, either standard or clinical trial treatment. Doctors complied with some but not other aspects of a standard procedure for discussing clinical trials. This reflects the difficulty inherent in seeking ethical informed consent and the need for communication skills training for oncologists.

Randomised clinical trials have come to be regarded as the gold standard in treatment evaluation. However, many doctors see the discussion of a clinical trial as an intrusion into the doctor-patient relationship and find these discussions difficult to initiate. Detailed informed consent is now a requirement of patient participation in trials; however, it is known that patients commonly fail to understand and recall the information conveyed. These difficulties for doctors and patients raise questions about the ethical integrity of the informed consent process. In this study, we have developed a set of communication strategies underpinned by ethical, linguistic and psychological theory, designed to assist doctors in this difficult task. Initially, audiotape transcripts of 26 consultations in which 10 medical oncologists invited patients to participate in clinical trials were analysed by expert ethicists, linguists, oncologists and psychologists, using rigorous qualitative methodology. A subset of seven of these was subjected to detailed linguistic analysis. A strategies document was developed to address themes which emerged from these analyses. This document was presented to relevant expert stakeholders. Their feedback was incorporated into the final document. Four themes emerged from the analysis; (a) shared decision-making, (b) the sequence of moves in the consultation, (c) the type and clarity of the information provided and (d) disclosure of controversial information and coercion. Detailed strategies were developed to assist doctors to communicate in these areas. We have developed a set of ethical strategies which may assist health professionals in this difficult area. A training package based on these strategies is currently being evaluated in a multi-centre randomised controlled trial.

A question prompt list (QPL) is a structured list of questions designed to encourage patients to acquire information during a medical consultation. It has been shown to be an effective, inexpensive means of helping cancer patients ask questions in certain content areas when consulting an oncologist. The objective of this study was to develop a QPL for cancer patients seeing a surgeon initially, targeting issues identified by patients as important. Focus groups and structured interviews were convened with 22 cancer patients. One focus group was conducted with allied health professionals. Focus groups were audiotaped, transcribed and content analysed to ensure all issues were identified. The results led to the identification of 59 questions covering five themes. We have grouped the questions under the following themes: preliminary negotiation and discussion of diagnosis and its implications; further investigations--why and how; am I seeing the right doctor--who else should I see?; treatment information and options; and support. Participants believed that the QPL would be useful not only during diagnosis and discussions regarding the surgical care but also subsequently. Patients felt that provision and endorsement of a QPL would assist them to achieve their information needs and participation preferences.

Background: Current recommendations on how to break bad news are primarily based on expert opinion. Little is known about the association between communication practices and patients' psychological response., Patients and Methods: One-hundred and thirty-one patients with newly diagnosed melanoma were surveyed 4 months after the initial consultation at the Sydney Melanoma Unit regarding their communication experiences and their satisfaction with these experiences. They completed the Hospital Anxiety and Depression Scale (HADS) at this time, and 4 and 13 months later., Results: Both patients' satisfaction with communication and their psychological morbidity were found to be associated with particular communication practices. Practices linked to lower anxiety included preparing the patient for a possible diagnosis of cancer; having the people wanted by the patient present to hear the diagnosis; giving the patient as much information about the diagnosis as desired; providing written information; presenting the information clearly; discussing the patient's questions the same day; talking about the patient's feelings; and being reassuring. Practices linked with lower levels of depression included using the word 'cancer'; discussing the severity of the situation, life expectancy and how the cancer might affect other aspects of life; and encouraging the patient to be involved in treatment decisions., Conclusions: This study provided preliminary evidence that communication strategies recommended in the literature produce positive patient outcomes. Further studies are needed which document actual communication.

Background: Patients value audiotapes of their oncology consultations and letters summarising the discussion, and report improved recall and satisfaction when they receive them. However, studies to date have provided these interventions only after the initial or 'bad news' consultation. This study aimed to evaluate the utility of audiotaping routine follow-up oncology consultations., Patients and Methods: This was a prospective study following a cohort of consecutive patients attending routine follow-up at oncology outpatient appointments with one oncologist. Patients were approached when they attended their appointment and offered the opportunity to be audiotaped. Acceptance rates and reasons for refusal were documented. Two weeks after the consultation, patients were telephoned regarding their response to the tape and were sent a letter summarising the consultation. Two weeks later they received a further telephone call regarding the letter and their perceptions of the comparative value of the two interventions., Results: Seventy-five per cent of patients were female and for 40% English was not their first language. The patients had attended a median of 14 previous oncology appointments; 52 patients were offered audiotaping, 43 accepted and 30 decided to take home a copy of the audiotape. One patient felt recording had limited the discussion. Patients refused the tape most commonly because they felt no need for this aid, and accepted it most commonly to aid recall or share with family. Twenty-six patients listened to the tape, 14 did so more than once. Twenty had shared it with another person and over 75% thought it was useful. The majority (57%) preferred to receive both the tape and letter, with three preferring the tape alone and seven the letter. Married patients and those receiving bad news were more likely to want the tape., Conclusions: Audiotaping follow-up consultations is an inexpensive procedure that is appreciated by the majority of patients. Randomised controlled trials of their impact are warranted.

The diagnosis and treatment of cancer cause considerable psychological distress and morbidity. Consequently, cancer patients have high needs for informational and emotional support and doctors vary in their ability to recognise and address these needs. This study investigated patients' attempts to gain informational and emotional support through the use of verbal cues. The sample consisted of 298 patients with heterogeneous cancers, seeing one of five medical and four radiation oncologists for the first time. Sociodemographic variables and patient anxiety and satisfaction ratings were obtained. Transcripts of the audiotaped consultations were analysed and question-asking, use of indirect cues, cue type (informational or emotional), content categories in which questions and cues occurred and doctor response (responded to or not responded to), were recorded. Patients asked a median of 11 questions and gave two cues per consultation, usually during treatment discussions. Patients gave, and doctors responded to, more informational than emotional cues. Patients gave significantly more informational cues during longer consultations. Younger and female patients gave more cues for emotional support and asked questions. No demographic variables were associated with the doctors' response to emotional and informational cues; however, consultations in which more informational cues were responded to were shorter, even when controlling for the number of cues given. Satisfaction with the consultation and patient anxiety were unaffected by doctors' responses to cues. Overall, results showed that doctors effectively identify and respond to the majority of informational cues; however, they are less observant of and able to address cues for emotional support. Cues can be addressed without lengthening the consultation or increasing patient anxiety., (Copyright 2002 John Wiley & Sons, Ltd.)

Patient participation in medical consultations has been demonstrated to benefit their subsequent psychological well being. Question asking is one way in which patients can be active. We investigated 2 means of promoting cancer patient question asking. One was the provision of a question prompt sheet to patients prior to their initial consultation with their oncologist. The second was the active endorsement and systematic review of the question prompt sheet by their oncologist. 318 patients with heterogeneous cancers, seeing one of 5 medical and 4 radiation oncologists for the first time, were randomised to either receive or not receive a question prompt sheet. Doctors were randomised to either proactively address or passively respond to the question prompt sheet in the subsequent consultation. Anxiety was assessed prior to the consultation. Consultations were audiotaped and content analysed. Anxiety was assessed again immediately following the consultation. Within the next 10 days patients completed questionnaires assessing information needs, anxiety and satisfaction and were given a structured telephone interview assessing information recall. Patients provided with a question prompt sheet asked more questions about prognosis compared with controls and oncologists gave significantly more prognostic information to these patients. Provision of the question prompt sheet prolonged consultations and increased patient anxiety; however, when oncologists specifically addressed the prompt sheet, anxiety levels were significantly reduced, consultation duration was decreased and recall was significantly improved. A patient question prompt sheet, used proactively by the doctor, is a powerful addition to the oncology consultation., (Copyright 2001 Cancer Research Campaign)

Previous studies have demonstrated that the majority of cancer patients fail to achieve their desired level of participation during treatment decision making. However, it is unclear whether this failure affects patient well-being and satisfaction. Furthermore, whilst shared decision making is currently espoused as the preferred model for doctor patient relations, little empirical evidence exists showing it has beneficial effects for patients. We aimed to evaluate the impact of shared decision making and the achievement of preferred role on patient anxiety, recall of information, and satisfaction. Patients with cancer indicated their preferred level of participation in decision making and preferences for information and emotional support prior to their initial consultation with an oncologist. Anxiety was assessed prior to and immediately after the consultation and recall seven days after the consultation. Anxiety was reassessed at two-weeks post-consultation at which time patients also reported their satisfaction with the consultation and perceived role of participation in treatment decision making. Satisfaction with the information and emotional support received was also evaluated. Of the 233 patients available for analysis, a match between preferred and perceived roles was found for over one-third of patients (34%), with 29% more active and 37% less involved in decision making than preferred. Multivariate analyses demonstrated that role mismatch significantly predicted changes in anxiety levels from pre to immediate postconsultation (p = 0.03). However, irrespective of preferred role in decision making, perceived role, but not role mismatch, significantly and independently predicted satisfaction with both the consultation (p = 0.0005) and the amount of information and emotional support received from the doctor (p = 0.004). Patients who reported a shared role in decision making were most satisfied with the consultation and with the information about treatment and emotional support received. Those who reported that either themselves or the doctor exclusively made the decision were least satisfied. These findings underscore the pre-eminence of the shared decision making model and suggest that encouraging participation may be the safest standard approach. Doctor - as well as patient - based interventions are required to promote patient participation.

Background: In the past, recommendations on how to break the bad news of a cancer diagnosis have been based on expert opinion. Recently, consensus-based guidelines for medical practitioners have been developed. The objective of this work is to investigate patient preferences for communication practices and to identify any disparities between these guidelines, patient preferences and patient recollections of hearing their diagnosis., Patients and Methods: A consecutive sample of 131 newly diagnosed melanoma patients were surveyed approximately 4 months after initial diagnosis to document their preferences and recollections of their communication experiences., Results: Of the 'breaking bad news' recommendations investigated, patients did not strongly endorse the doctor helping tell others of the diagnosis or telling the patient about cancer support services. Very few patients expressed a preference for having another health professional present. One communication feature, the patient feeling confident about getting the best treatment, was endorsed as 'very important' but does not feature in published guidelines. The most notable disparities between guidelines and the reported experiences of patients related to perceived delays in receiving the diagnosis, and having adequate opportunity to ask their clinician questions., Conclusion: Current Australian recommendations on how to communicate a diagnosis of cancer were generally supported by the patients' expressed preferences, but several modifications are proposed., Implications: Suggestions are offered to help overcome the disparities identified between recommendations and patients' preferences when a diagnosis of cancer is being communicated.

Objective: Although doctor-patient communication has been the focus of numerous studies, there is a lack of empirical evidence on which to base a curriculum for teaching effective communication skills for use in an oncology setting. Research within the general practice area identifies patient-centred and doctor-centred behaviours as the most important dimensions of doctor-patient communication. This study examined patients and their relatives/friends' preferences for and satisfaction with patient-centred and doctor-centred consulting styles. It was argued that by determining patient preferences for consulting styles, specific recommendations for improving communication in the oncology setting could be formulated., Participants and Methods: One hundred and thirteen women who had been treated for breast cancer and 48 of their relatives or friends watched videotaped scenarios of an oncology consultation, using professional actors. Viewers were randomly allocated to either a good prognosis or poor prognosis video, in which the oncologist discussed the patient's diagnosis, treatment and prognosis. These segments were presented in both styles to allow viewers to directly compare and contrast the patient-centred and doctor-centred approach. Outcomes included style preference and satisfaction. Demographic details, information and involvement preferences, anxiety and depression levels were also obtained., Results: Both patients and their relatives or friends significantly preferred a patient-centred consulting style across all aspects of the consultation (p<0.0001), except within the treatment segment of the good prognosis video where there was no significant difference. One third of the viewers preferred a doctor-centred style for the treatment and prognosis segments. Predictors of a patient-centred style preference in the treatment and prognosis segments included watching a poor prognosis video (OR=2.45, 95% CI 1.04-5.81, p=0.04; OR=3.22, 95% CI 1.22-8.50, p=0.02, respectively), and being employed in a professional occupation (OR=2.38, 95% CI 1.02-5.53, p=0.04 for the treatment segment only). Satisfaction ratings varied within and across videos., Conclusion: Despite some methodological limitations, this study provides empirical data indicating that patients and their relatives or friends prefer a patient-centred approach to the consultation, particularly when the patient has a poor prognosis. The fact that a substantial minority of patients preferred a doctor-centred style emphasizes the need to enhance physicians' abilities to recognize different patient needs throughout the consultation., (Copyright 2000 John Wiley & Sons, Ltd.)

Objectives: To determine the degree to which women with early breast cancer understand the prognostic information communicated by clinicians after breast cancer diagnosis, and their preferences for how this information is presented., Design: Cross-sectional survey conducted within two months of breast cancer diagnosis, using a self-administered written questionnaire., Participants and Setting: One hundred women attending five Sydney teaching hospitals and one country hospital, who were diagnosed with early stage breast cancer between January and December 1997., Results: The 100 respondents represented 70% of the 143 women originally approached to participate. Many respondents did not fully understand the language typically used by surgeons and cancer specialists to describe prognosis: 53% could not calculate risk reduction (with adjuvant therapy) relative to absolute risk; 73% did not understand the term "median" survival; and 33% believed a cancer specialist could predict an individual patient's outcome. Women in professional/paraprofessional occupations understood more prognostic information than nonprofessional women. There was no agreement on the descriptive equivalent of a "30%" risk, nor the numerical interpretation of a "good" chance of survival. Forty-three per cent of women preferred positively framed messages (e.g., "chance of cure"), and 33% negatively framed messages (e.g., "chance of relapse"). The information women most wanted was that relating to probability of cure, staging of their cancer, chances of treatment being successful, and 10-year survival figures with and without adjuvant therapy., Conclusions: Our results suggest that misunderstanding is responsible for women's confusion about breast cancer prognosis. Clinicians should use a variety of techniques to communicate prognosis and risk, and need to verify that the information has been understood.