Estimating survival in advanced cancer: a comparison of estimates made by oncologists and patients.

PURPOSE: To compare estimates of expected survival time (EST) made by patients with advanced cancer and their oncologists. METHODS: At enrolment patients recorded their "understanding of how long you may have to live" in best-case, most-likely, and worst-case scenarios. Oncologists estimated survival time for each of their patients as the "median survival of a group of identical patients". We hypothesized that oncologists' estimates of EST would be unbiased (~ 50% longer or shorter than the observed survival time [OST]), imprecise (< 33% within 0.67 to 1.33 times OST), associated with OST, and more accurate than patients' estimates of their own survival. RESULTS: Twenty-six oncologists estimated EST for 179 patients. The median estimate of EST was 6.0 months, and the median OST was 6.2 months. Oncologists' estimates were unbiased (56% longer than OST), imprecise (27% within 0.67 to 1.33 times OST), and significantly associated with OST (HR 0.88, 95% CI 0.82 to 0.93, p < 0.01). Only 41 patients (23%) provided a numerical estimate of their survival with 107 patients (60%) responding "I don't know". The median estimate by patients for their most-likely scenario was 12 months. Patient estimates of their most-likely scenario were less precise (17% within 0.67 to 1.33 times OST) and more likely to overestimate survival (85% longer than OST) than oncologist estimates. CONCLUSION: Oncologists' estimates were unbiased and significantly associated with survival. Most patients with advanced cancer did not know their EST or overestimated their survival time compared to their oncologist, highlighting the need for improved prognosis communication training. Trial registration ACTRN1261300128871.

Author Correction: Chemotherapy with radiotherapy influences time-to-development of radiation-induced sarcomas: a multicenter study.

Since the publication of this paper, the authors noticed an error in Fig. 1. The X-axis on all the figure panels should read 'Time (years)', not 'Time (months)'. The corrected Fig. 1 is shown below.

Chemotherapy with radiotherapy influences time-to-development of radiation-induced sarcomas: a multicenter study.

BACKGROUND: An increasing number and proportion of cancer patients with apparently localised disease are treated with chemotherapy and radiation therapy in contemporary oncology practice. In a pilot study of radiation-induced sarcoma (RIS) patients, we demonstrated that chemotherapy was associated with a reduced time to development of RIS. We now present a multi-centre collaborative study to validate this association. METHODS: This was a retrospective cohort study of RIS cases across five large international sarcoma centres between 1 January 2000 to 31 December 2014. The primary endpoint was time to development of RIS. RESULTS: We identified 419 patients with RIS. Chemotherapy for the first malignancy was associated with a shorter time to RIS development (HR 1.37; 95% CI: 1.08-1.72; P=0.009). In the multi-variable model, older age (HR 2.11; 95% CI 1.83-2.43; P<0.001) and chemotherapy for the first malignancy (HR 1.61; 95% CI 1.26-2.05; P<0·001) were independently associated with a shorter time to RIS. Anthracyclines and alkylating agents significantly contribute to the effect. CONCLUSIONS: This study confirms an association between chemotherapy given for the first malignancy and a shorter time to development of RIS.

Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations.

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.

Using scenarios to explain life expectancy in advanced cancer: attitudes of people with a cancer experience.

PURPOSE: We sought the attitudes of people with a cancer experience to using best case, worst case, and typical scenarios for survival to explain life expectancy. METHODS: Oncology clinic attendees and Breast Cancer Network Australia (BCNA) members completed a survey describing two formats for explaining life expectancy to a hypothetical patient with advanced cancer-providing either three scenarios for survival or just the median survival time. RESULTS: Characteristics of the 505 respondents from outpatient clinics (n = 251) and BCNA (n = 254) were median age of 58 years, female 74 %, and breast primary 64 %. More respondents agreed that explaining three scenarios (vs. median survival) would make sense (93 vs. 75 %), be helpful (93 vs. 69 %), convey hope (68 vs. 44 %), and reassure (60 vs. 40 %), while fewer respondents agreed that explaining three scenarios (vs. median survival) would upset people (24 vs. 36 %); all p values < 0.001. Most respondents agreed that each scenario should be presented: best case 89 %, worst case 82 %, and typical 92 %. For information about their own prognosis, 88 % preferred all three scenarios and 5 % a single estimate of the median. Respondents with higher education were more likely to agree that presenting three scenarios would be helpful (95 vs. 90 %, p = 0.05). Respondents with breast cancer were more likely to agree that explaining three scenarios would upset people (31 vs. 13 %, p < 0.001). CONCLUSIONS: Most respondents judged presentation of best case, worst case, and typical scenarios preferable and more helpful and reassuring than presentation of just the median survival time when explaining life expectancy to patients with advanced cancer.

Estimating typical, best-case and worst-case life expectancy scenarios for patients starting chemotherapy for advanced non-small-cell lung cancer: a systematic review of contemporary randomized trials.

INTRODUCTION: We sought to estimate life expectancy scenarios for patients starting chemotherapy for advanced non-small-cell lung cancer (NSCLC). METHODS: We searched for randomized first-line chemotherapy trials published from January 2000 to April 2008. We recorded median time to progression (TTP) and median overall survival (OS) and extracted the following percentiles (represented scenario) from each OS curve: 90th (worst-case), 75th (lower-typical), 25th (upper-typical) and 10th (best-case). For each OS curve we divided these percentiles (scenarios) in turn by the median to determine if a simple relationship existed between each scenario and the median. RESULTS: From 60 trials (29,657 patients), the mean for median TTP was 4.8 months (interquartile range [IQR] 4.0-5.3), the mean for median OS was 9.2 months (IQR 8.1-10.1) and the mean ratio for median OS to median TTP was 2.0 (IQR 1.7-2.2). The mean (IQR) in months for each OS scenario was: worst-case, 2.4 (1.9-2.7); lower-typical, 4.8 (4.2-5.4); upper-typical, 16.3 (14.4-18.1); and best-case, 25 (21.0-28.0). The mean values (IQR) for each scenario divided by the median were: worst-case/median 0.26 (0.21-0.29); lower-typical/median 0.53 (0.5-0.57); upper-typical/median 1.81 (1.69-1.93) and best-case/median 2.84 (2.57-3.19). These values can be approximated by the simple multiples: 0.25, 0.5, 2 and 3. Independent predictors of longer OS were ECOG PS<2, adenocarcinoma, and longer TTP; all p-values<0.001. CONCLUSION: Simple multiples of an OS curve's median provided accurate estimates of typical (half to double the median), best-case (triple the median), and worst-case (one quarter of the median) life expectancy scenarios for patients starting chemotherapy for advanced NSCLC.

Impact of a cancer clinical trials web site on discussions about trial participation: a cluster randomized trial.

BACKGROUND: Cancer patients want access to reliable information about currently recruiting clinical trials. PATIENTS AND METHODS: Oncologists and their patients were randomly assigned to access a consumer-friendly cancer clinical trials web site [Australian Cancer Trials (ACT), www.australiancancertrials.gov.au] or to usual care in a cluster randomized controlled trial. The primary outcome, measured from audio recordings of oncologist-patient consultations, was the proportion of patients with whom participation in any clinical trial was discussed. Analysis was by intention-to-treat accounting for clustering and stratification. RESULTS: Thirty medical oncologists and 493 patients were recruited. Overall, 46% of consultations in the intervention group compared with 34% in the control group contained a discussion about clinical trials (P=0.08). The mean consultation length in both groups was 29 min (P=0.69). The proportion consenting to a trial was 10% in both groups (P=0.65). Patients' knowledge about randomized trials was lower in the intervention than the control group (mean score 3.0 versus 3.3, P=0.03) but decisional conflict scores were similar (mean score 42 versus 43, P=0.83). CONCLUSIONS: Good communication between patients and physicians is essential. Within this context, a web site such as Australian Cancer Trials may be an important tool to encourage discussion about clinical trial participation.

A case of uterine tumour resembling ovarian sex cord tumour responding to second-line, single agent anastrazole.

Uterine tumour resembling ovarian sex cord tumour (UTROSCT) are a histological variant of endometrial stromal sarcomas (ESS). There is no established medical management of metastatic UTROSCT or ESS, although there is evidence supporting the use of hormonal therapy. Given the success of aromatase inhibitors in breast cancer, their potential role in ESS and UTROSCT is of current interest. We report the first case of response to second-line, single agent anastrazole in a patient with metastatic UTROSCT.

Enhancing treatment decision-making: pilot study of a treatment decision aid in stage IV non-small cell lung cancer.

We developed a decision aid (DA) for patients with metastatic non-small cell lung cancer (NSCLC), to better inform patients of their prognosis and treatment options, and facilitate involvement in decision-making. In a pilot study, 20 patients with metastatic NSCLC attending outpatient clinics at a major cancer centre, who had already made a treatment decision, reviewed acceptability of the DA. The median age of the patients was 61 years (range 37-77 years), 35% were male, 20% had a university education, and most (75%) had English as a first language. Most had received chemotherapy, with 65% currently on treatment. Patients were not anxious at baseline and had clear understanding of the goals and toxicity of chemotherapy in advanced NSCLC. After reviewing the DA, patients' anxiety decreased slightly (P=0.04) and knowledge scores improved by 25% (P<0.001). Most improvements in understanding were of prognosis with and without chemotherapy, although patients still believed advanced NSCLC to be curable. Patients rated the DA highly with respect to information clarity, usefulness and were positive about its use in practice, although 40% found the prognostic information slightly upsetting. The DA for advanced NSCLC is feasible, acceptable to patients and improves understanding of advanced NSCLC without increasing patient anxiety.

An examination of the initial cancer consultation of medical and radiation oncologists using the Cancode interaction analysis system.

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.

The context influences doctors' support of shared decision-making in cancer care.

Most cancer patients in westernised countries now want all information about their situation, good or bad, and many wish to be involved in decision-making. The attitudes to and use of shared decision-making (SDM) by cancer doctors is not well known. Australian cancer clinicians treating breast, colorectal, gynaecological, haematological, or urological cancer were surveyed to identify their usual approach to decision-making and their comfort with different decision-making styles when discussing treatment with patients. A response rate of 59% resulted in 624 complete surveys, which explored usual practice in discussing participation in decision-making, providing information, and perception of the role patients want to play. Univariate and multivariate analyses were performed to identify predictors of use of SDM. Most cancer doctors (62.4%) reported using SDM and being most comfortable with this approach. Differences were apparent between reported high comfort with SDM and less frequent usual practice. Multivariate analysis showed that specialisation in breast or urological cancers compared to other cancers (AOR 3.02), high caseload of new patients per month (AOR 2.81) and female gender (AOR 1.87) were each independently associated with increased likelihood of use of SDM. Barriers exist to the application of SDM by doctors according to clinical situation and clinician characteristics.

Seeking informed consent to cancer clinical trials; evaluating the efficacy of doctor communication skills training.

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.

Consumer impact of an interactive decision aid for rectal cancer patients offered adjuvant therapy.

OBJECTIVE: There is increasing interest in the use of decision aids (DAs) to facilitate patient involvement in clinical decisions. This study explored the views of patients with colorectal cancer and participants in a community bowel screening service regarding an interactive DA concerning adjuvant treatment for rectal cancer, and the impact of the aid on knowledge, anxiety, attitudes and preferences for treatment options. METHOD: Fourteen patients with colorectal cancer participated in four focus groups. Eighty-nine participants in a community bowel screening service completed a questionnaire before and 1 week after viewing the DA. Thirty were randomly selected to participate in a telephone interview to obtain qualitative feedback about the DA. RESULTS: Focus group participants reported using information to evaluate their doctor's care and expertise, or to prepare themselves for future symptoms and side-effects. Most supported the use of a DA and preferred pie charts to convey risk information. Within the community sample, anxiety remained stable and knowledge increased after exposure to the DA. Almost all participants found the DA useful and easy to understand, and felt it would make the process of decision making easier. CONCLUSION: A DA regarding adjuvant therapy for rectal cancer appears to be valued and to produce positive outcomes. A randomized controlled trial of this intervention is now required.

Disarming the guarded prognosis: predicting survival in newly referred patients with incurable cancer.

People affected by cancer want information about their prognosis but clinicians have trouble estimating and talking about it. We sought to determine the nature and accuracy of medical oncologists' estimates of life expectancy in newly referred patients with incurable cancer. With reference to each patient, medical oncologists estimated how long they thought 90, 50, and 10% of similar patients would live. These proportions were chosen to reflect worst case, predicted, and best case scenarios suitable for discussions. After a median follow-up of 35 months, 86 of the 102 patients had died with an observed median survival of 12 months. Oncologists' estimates of each patient's worst case, predicted and best case scenarios were well-calibrated: 10% of patients lived for fewer months than estimated for the worst 10% of similar patients; 50% lived for at least as long as estimated for 50% of similar patients (predicted survival), and 17% lived for more months than estimated for the best 10% of similar patients. Oncologists' estimates of each patient's predicted survival were imprecise: 29% were within 0.67-1.33 times the patient's actual survival, 35% were too optimistic (>1.33 times the actual survival), and 39% were too pessimistic (<0.67 times the actual survival). The proportions of patients with actual survival times bounded by simple multiples of their predicted survival were as follows: 61% between half to double their predicted, 6% at least three to four times their predicted, and 4% no more than 1/6 of their predicted; similar to the proportions in an exponential distribution (about 50%, 10% and 10% respectively). Ranges based on simple multiples of the predicted survival time appropriately convey prognosis and its uncertainty in newly referred people with incurable cancer.

Communicating prognosis in cancer care: a systematic review of the literature.

Prognosis is an issue that most doctors and patients describe as difficult to discuss and the best way of presenting prognostic information to optimise patient understanding, psychological adjustment and decision-making is uncertain. A systematic review of the literature was conducted with the aim of clarifying the current available knowledge of patient preferences, clinician views and current practice regarding the communication of prognosis. Eleven primary research questions guided organisation of the review findings, which were: patient preferences for prognostic information and preferred style of communicating prognosis; disclosure of prognosis to family members; physicians' views on communication of prognosis; current practice of delivering prognostic information; patient understanding and awareness of prognostic information; cultural differences in preferences and understanding; impact of prognostic information on patient outcomes; and interventions to facilitate prognostic discussion. Predictors of patient preferences for and understanding of prognostic information were also summarised. Studies are summarised under the subcategories according to the participants' disease stage. It was found that the majority of the published research has been conducted in the early stage cancer setting providing mostly descriptive evidence, and there is little evidence of the best method of communicating prognosis or of the impact of prognostic information on patient outcomes.

Seeking informed consent to cancer clinical trials: describing current practice.

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.

Developing ethical strategies to assist oncologists in seeking informed consent to cancer clinical trials.

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.

Asking questions can help: development of a question prompt list for cancer patients seeing a surgeon.

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.

Outcomes research: what is it and why does it matter?

Outcomes research is a broad umbrella term without a consistent definition. However it tends to describe research that is concerned with the effectiveness of public-health interventions and health services; that is, the outcomes of these services. Attention is frequently focused on the affected individual - with measures such as quality of life and preferences - but outcomes research may also refer to effectiveness of health-care delivery, with measures such as cost-effectiveness, health status and disease burden. The present review details the historical background of outcomes research to reveal the origins of its diversity. The value and relevance of outcomes research, commonly employed research techniques and examples of recent publications in the area are also discussed.