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P N Butow

Publications and source records attributed to P N Butow.

At least 19 recordsLinked to original sources

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.

Adult↗

Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: a pilot study.

UNLABELLED: The literature on risk perception in women from high-risk breast cancer families reveals persistent over-estimation of risk, even after counseling. In this study, a communication aid was designed to facilitate discussion of risk between clinical geneticists and genetic counselors and women from this high-risk population. METHOD: Stage 1. The aid was developed by an expert panel of clinical geneticists, genetic counselors, psychologists, an epidemiologist, an oncologist, linguists and a consumer. It was guided by the international literature on risk communication and a large multi-centre Australian study of risk communication. The 13 page full-color communication aid used varying formats of words, numbers, graphs and pie-charts to address (a) the woman's subjective risk; (b) the population risk of breast cancer; c) the risk of inherited breast cancer; (d) the cumulative risk for women with BRCA1 and BRCA2 mutations; (e) family risk factors; (f) the woman's suitability for genetic testing; (h) screening and management recommendations, and (i) a re-assessment of the woman's subjective risk. Stage 2: A before-after pilot study of 38 women who were unaffected with breast cancer and were attending four Australian familial cancer clinics was undertaken. Baseline and follow-up questionnaires were completed by 27 women. Outcomes were compared to those observed in 107 similar women undergoing genetic counseling without the communication aid in 2001. RESULTS: The risk communication aid appears to be beneficial; breast cancer genetics knowledge improved in some areas and importantly, risk perceptions improved in the cohort receiving the communication aid. Psychological measures showed no difference in anxiety or depression between the group receiving the communication aid and the comparison cohort. Women and clinicians were very positive about the usefulness of the communication aid as an adjunct to the genetic counseling consultation.

Australia↗

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.

Aged↗

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.

Awareness↗

Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomes.

This longitudinal study aimed to document (i) the information-giving and patient-communication styles of clinical geneticists and genetic counsellors (consultants) in familial breast cancer clinics and (ii) assess the effect of these styles on women's knowledge, whether their expectations were met, satisfaction, risk perception and psychological status. A total of 158 women from high-risk breast cancer families completed self-report questionnaires at 2 weeks preconsultation and 4 weeks postconsultation. The consultations were audiotaped, transcribed and coded. Multivariate logistic regressions showed that discussing prophylactic mastectomy (P=0.00) and oophorectomy (P=0.01) led to women having significantly more expectations met; discussing genetic testing significantly decreased anxiety (P=0.03) and facilitating understanding significantly decreased depression (P=0.05). Receiving a summary letter of the consultation significantly lowered anxiety (P=0.01) and significantly increased the accuracy of perceived risk (P=0.02). Women whose consultant used more supportive communications experienced significantly more anxiety about breast cancer at the 4 weeks follow-up (P=0.00). These women were not significantly more anxious before genetic counselling. In conclusion, this study found that consultants vary in the amount of information they give and the way they communicate; and this variation can result in better or worse psychosocial outcomes. Greater use of supportive and counselling communications appeared to increase anxiety about breast cancer. Identifying methods to assist consultants to address emotional issues effectively may be helpful.

Adult↗

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.

Adult↗

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.

Adult↗

Cancer patients' preferences for written prognostic information provided outside the clinical context.

Cancer patients' preferences for written prognostic information independent of the clinical context have not previously been investigated. This study aimed to assist a state cancer organisation to provide information to patients by assessing patients' understanding of statistical information; eliciting their preferences for framing, content and presentation; and assessing the acceptability of a card sort for obtaining preferences. With the exception of conditional and relative survival, initial difficulties in understanding statistical concepts were improved with a plain language explanation. Analysis of the interview transcripts revealed that participants generally supported the provision of written information about survival in booklets and on the Internet. They wanted positive, relevant and clear information. Participants said that the use of, and preferences for, this information would be affected by a patient's age, time since diagnosis, ability to cope with having cancer and the perceived credibility of the information source. They found the card sort acceptable, saying it made the assessment of understanding and selection of preferences easy. This study has identified two fundamental, and sometimes conflicting, factors underlying patients' preferences: the communication of hope and the need to understand information it has also identified patient characteristics thought to influence preferences. These factors and characteristics need to be taken into account when developing written prognostic information for patients.

Adaptation, Psychological↗

Psychological responses of patients receiving a diagnosis of cancer.

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.

Adaptation, Psychological↗

Tailoring communication in consultations with women from high risk breast cancer families.

This multicentre study examined the influence of patient demographic, disease status and psychological variables on clinical geneticists/genetic counsellors (consultants) behaviours in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight women completed a pre-clinic self-report questionnaire. The consultations were audiotaped, transcribed verbatim and coded. Consultants did not vary their behaviour according to women's expectations. However, significantly more aspects of genetic testing were discussed with women who were affected with breast cancer (P<0.001), screening and management with unaffected women (P=0.01) and breast cancer prevention with younger women (P=0.01). Prophylactic mastectomy was discussed more frequently with women with medical and allied health training (P=0.02), and prophylactic oophorectomy with women affected with breast cancer (P=0.03), those in non-professional occupations (P=0.04) and with a family history of breast and ovarian cancer (P<0.001). Consultants used significantly more behaviours to facilitate understanding with women who were in non-professional occupations (P=0.04); facilitated active patient involvement more with women affected with breast cancer (P<0.001) and used more supportive and counselling behaviours with affected women (P=0.02). This study showed that patient demographics were more likely to predict consultants' communication behaviours than the woman's psychological status. Methods to facilitate assessment of psychological morbidity are needed to allow more tailored communication.

Adult↗

Audiotapes of oncology consultations: only for the first consultation?

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.

Adult↗

Informing breast cancer patients about clinical trials: a randomized clinical trial of an educational booklet.

BACKGROUND: To evaluate the impact of an educational booklet on women's knowledge of and willingness to participate in a randomized clinical trial of treatment for breast cancer. MATERIALS AND METHODS: Women undergoing surgery for newly diagnosed early stage breast cancer were randomized to receive, or not, an information booklet explaining the need for and manner in which randomized trials are conducted. RESULTS: Eighty-three women with newly diagnosed early stage breast cancer completed a questionnaire assessing attitudes to random clinical trials (RCTs) and were randomized to receive usual information treatment options provided from their oncologist, or the educational booklet in addition to usual information from their oncologist (42 usual information, 41 booklet). Fewer women who received the clinical trials booklet (40% versus 47%) would consider participating in the hypothetical clinical trial (P = 0.6). Mean knowledge scores increased for both groups; moreover, women who did not receive the booklet showed similar improvements to women who received the booklet [mean difference 0.09, 95% confidence interval (CI) -0.66 to 0.83]. In a multivariate analysis women who would consider participating in the clinical trial were more anxious [odds ratio (OR) 5.9, P = 0.02] had involved lymph nodes (OR 5.8, P = 0.02) and were less influenced by negative aspects of clinical trials (OR 7.7, P = 0.0001). After adjustment for these variables women who received the educational booklet were significantly less likely to consider trial participation (OR 0.22, P = 0.05). CONCLUSIONS: Educating women about clinical trials in this manner appears ineffective in improving recruitment to RCTs. Women appear to be more influenced by their perception of risk than understanding. This finding has ethical implications for communication of information about RCTs.

Attitude to Health↗

Promoting patient participation and shortening cancer consultations: a randomised trial.

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.

Adolescent↗

Communicating prognosis to patients with metastatic disease: what do they really want to know?

Clinical audits suggest that prognosis is often not discussed with cancer patients, and cancer patients often over- or underestimate their prognosis. Doctors wish to convey information honestly and sensitively, but are often unsure how best to achieve this. An evidence base and guidelines in this area are lacking. This study aimed to obtain patient and health professional views on optimal ways of presenting prognosis to patients with metastatic breast cancer. Qualitative methods were used to generate participant views and experiences. Seventeen patients and 13 health professionals working in cancer care participated in structured interviews, which were audio-taped and transcribed. Sampling was discontinued when informational redundancy was achieved. The transcribed interviews were content analysed by a trained assessor using the constant-comparative method. Seven primary themes were identified, including: communication within a caring, trusting, long-term relationship; open and repeated negotiations for patient preferences for information; clear, straightforward presentation of prognosis where desired; strategies to ensure patient understanding; encouragement of hope and a sense of control; consistency of communication within the multi-disciplinary team; communication with other members of the family. Communication about prognosis in a metastatic setting requires considerable resources from both patients and doctors. Nevertheless, a number of useful strategies were identified. A quantitative study obtaining feedback from a large and representative sample of patients with metastatic cancer is now in progress, to confirm patient preferences for the communication styles identified in this qualitative study.

Adult↗

Randomized clinical trials in oncology: understanding and attitudes predict willingness to participate.

PURPOSE: To explore the association at different time points in the trajectory of breast cancer care, between anxiety, knowledge, and attitudes, on women's willingness to participate in randomized clinical trials. MATERIALS AND METHODS: A cross-sectional survey was undertaken among women attending a breast clinic for screening mammography or diagnostic assessment plus women with newly diagnosed breast cancer to assess attitudes toward and willingness to participate in randomized clinical trials of breast cancer treatment. RESULTS: Five hundred forty-five women completed questionnaires assessing knowledge of and attitudes toward randomized clinical trials. The mean age of respondents was 48.9 years (SD, 11.3 years). Thirty-three percent of women would consider participating in a clinical trial if they had breast cancer. Women with breast cancer (31%) were significantly more likely to decline to participate than women attending for screening mammography (15%) or diagnostic assessment (15%, P =.0002). Women who might consider participating in a randomized clinical trial were more knowledgeable about randomized trials (mean difference, 0.7; 95% confidence interval [CI], 0.2 to 1.2; P =.003). In a multivariate analysis, women who would consider participating in a randomized trial were younger (odds ratio [OR], 0.96; 95% CI, 0.93 to 0.99), more likely to want an active role in decision-making (OR, 3.2; 95% CI, 1.3 to 7.6), and reported a greater impact from the positive aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.8) and less impact from the negative aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.2). CONCLUSION: These findings suggest that women who have a better understanding of issues about clinical trials have more favorable attitudes toward randomized trials and are more willing to consider participation in a clinical trial.

Adolescent↗

The role of psychosocial factors in the development of breast carcinoma: Part I. The cancer prone personality.

BACKGROUND: The authors conducted the current study to determine whether personality predisposes some individuals to develop cancer. METHODS: The current study examined the role of personality variables in 2224 older women recalled for assessment after routine mammography in a breast screening program. Using a semiprospective design, subjects completed self-report measures of defense style, locus of control, emotional expression and control, self-esteem, trait anxiety, and state anxiety and depression while waiting for medical examination. Multivariate analysis of variance was used to control for known risk factor variables and to examine differences between 3 control groups (normal tissue controls, benign/cystic controls not requiring biopsy, and benign biopsy controls) and 298 breast carcinoma subjects. RESULTS: No differences were detected between breast carcinoma subjects and controls based on measures of mature, immature, and neurotic defense style; locus of control of behavior; emotional expression-in, emotional expression-out, and emotional control; self-esteem; anxiety; or depression. CONCLUSIONS: The results of the current study found no evidence to support an independent association between these personality measures and the development of breast carcinoma. [See accompanying article on pages 686-97, this issue.]

Aged↗

The role of psychosocial factors in the development of breast carcinoma: Part II. Life event stressors, social support, defense style, and emotional control and their interactions.

BACKGROUND: The evidence supporting an association between life event stress and breast carcinoma development is inconsistent. METHODS: Five hundred fourteen women requiring biopsy after routine mammographic breast screening were interviewed using the Brown and Harris Life Event and Difficulties Schedule. Other psychosocial variables assessed included social support, emotional control, and defense style. Biopsy results identified 239 women with breast carcinoma and 275 women with benign breast disease. Multiple logistic regression analysis was used to distinguish between breast carcinoma subjects and benign breast disease controls based on these psychosocial variables and their interactions. RESULTS: The findings of the current study revealed a significant interaction between highly threatening life stressors and social support. Women experiencing a stressor objectively rated as highly threatening and who were without intimate emotional social support had a ninefold increase in risk of developing breast carcinoma. CONCLUSIONS: Although there was no evidence of an independent association between life event stress and breast carcinoma, the findings of the current study provided strong evidence that social support interacts with highly threatening life stressors to increase the risk of breast carcinoma significantly. [See also accompanying article on pages 679-85, this issue.]

Adaptation, Psychological↗