Biomedical subjects

Phyllis N Butow

Publications and source records attributed to Phyllis N Butow.

13 recordsLinked to original sources

PubMed2003

How oncologists discuss complementary therapy use with their patients: an audio-tape audit.

Understanding the dynamics of oncologist-patient communication regarding complementary therapy (CT) use is essential for the development of much-needed clinical guidelines. Discussions of CT use in 314 audio-taped initial consultations between cancer patients and their oncologists were identified and coded. Patients' anxiety levels and coping styles were also assessed. Reference to CT use was found in 91 consultations (29%). Patients and kin initiated most CT discussions, commonly during discussions of patients' medical history, treatment options or prognosis. In half of these discussions, patients volunteered that they were currently using a CT or were considering its use. Discussion of CT use was more likely to occur in consultations with patients who were younger, were better educated, spoke poorer English, had metastatic disease or limited life expectancy and expressed higher levels of fighting spirit and anxious preoccupation and lower levels of fatalism. The most commonly discussed CTs were: changes in diet; use of multivitamins, vitamin C or antioxidants; and having a positive attitude or fighting spirit. The doctor's overall response to CTs was most frequently coded as "encouraging", although 35% of attempts to initiate discussion were ignored by the oncologist. Doctors were more likely to make encouraging statements about CTs typically perceived to be potentially helpful versus potentially harmful. The current findings point to a need for practical consensus on how to communicate with cancer patients on the subject of CT use so that patients can receive the support and guidance that they are seeking from their oncologists.

Adaptation, Psychological↗

PubMed2003

Cancer knowledge and skills of interns in Australia and New Zealand in 2001: comparison with 1990, and between course types.

OBJECTIVE: To compare the cancer knowledge and skills of interns in 2001 who graduated from graduate medical program (GMP) courses with those from non-GMP courses, and to compare the cancer knowledge and skills of interns in 2001 with those who completed a similar survey in 1990. DESIGN: Questionnaire survey of recently graduated interns in a random sample of Australian and New Zealand hospitals. The questionnaire was designed to allow direct comparison with the 1990 survey, and was guided by the Australian Cancer Society's Ideal Oncology Curriculum for Medical Schools. RESULTS: 443 interns completed the survey (response rate, 62%; 42 were excluded, leaving 401 surveys for analysis: 118 from GMP courses and 283 from non-GMP courses). Interns from GMP courses felt more competent than those from non-GMP courses at discussing death (P = 0.02), breaking bad news (P = 0.04) and advising on smoking cessation (P = 0.02), but less competent at preparing a patient for a hazardous procedure (P = 0.02). More GMP interns would refer a breast cancer patient to a multidisciplinary clinic (83% versus 70%; P = 0.03). Knowledge about cancer risks and prognosis was significantly less in GMP interns, but GMP interns rated their clinical skills, such as taking a Pap smear, higher than non-GMP interns. The GMP and non-GMP groups did not differ in their exposure to cancer patients, but compared with 1990 interns recent graduates had less exposure to patients with cancer. CONCLUSIONS: GMP curricula appear to have successfully introduced new course material and new methods of teaching, but have not always succeeded in producing doctors with better knowledge about cancer. Recent graduates have less exposure to cancer patients than those who trained 10 years ago.

Adult↗

PubMed2003

Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review.

OBJECTIVES: To conduct a systematic review of the effects of genetic counselling and testing for familial breast cancer on women's perception of risk and psychological morbidity. DATA SOURCES: MEDLINE, PsychLIT and EMBASE were searched for the period 1980-2001. STUDY SELECTION: Studies were eligible if published in a peer-reviewed journal in English, included women with a family history of breast cancer who underwent genetic counselling or testing and had either a randomised controlled trial or prospective design, with a pre- and at least one post-counselling assessment. DATA SYNTHESIS: As there was considerable heterogeneity in populations and measures, results were summarised rather than subjected to meta-analysis. RESULTS: Overall, genetic counselling and testing appear to produce psychological benefits and to improve accuracy of risk perception. Carriers of mutations in cancer predisposition genes did not experience significant increases in depression and anxiety after disclosure of their mutation status, while non-carriers experienced significant relief. Women who were tested but declined to learn their results seemed to be at greater risk of a worse psychological outcome. CONCLUSIONS: To date, the data on psychological outcomes after genetic counselling and testing are reassuring. However, few studies used a randomised trial design, limiting the strength of the conclusions. Follow-up to date has been short, and we know little about the long-term impact of testing on patient behaviours, perceptions and psychological state.

Adaptation, Psychological↗

PubMed2003

Parents' attitudes to children's participation in randomized controlled trials.

OBJECTIVE: To explore parents' attitudes to children's participation in randomized controlled trials. STUDY DESIGN: Qualitative analysis of focus group discussions involving 33 parents from a pediatric teaching hospital and local school in Australia. Parents varied in age, gender, ethnicity, level of education, research experience, and child's health status. The transcribed discussions were analyzed by theme linkage using the constant comparative method. RESULTS: Parents balance risks and benefits when deciding about trial participation for their child. Perceived benefits include the offer of hope, better care of their child, the opportunity to access new treatments, healthcare professionals and health information, meeting others in similar circumstances, and helping others. Perceived risks include potential side effects, being randomized to ineffective treatments, and the inconvenience of participation. The decision for trial participation is also influenced by parental factors (parents' knowledge, beliefs, and emotional responses), child factors (the child's health status and preference about participation), trial factors (the use of placebos and uncertainties of participation), and doctor factors (doctor's recommendations and communication of trial information). CONCLUSIONS: Educating parents about trials, improving communication between trialists, pediatricians, and parents, increasing incentives while decreasing inconveniences, and providing decision aids for parents may increase parents' willingness to participate in trials.

Adult↗

PubMed2002

Ethical communication in clinical trials. Issues faced by data managers in obtaining informed consent.

BACKGROUND: Informed consent has been proposed as the optimal method for ensuring the ethical entry of patients into clinical trials. However, it is known that problems with informed consent exist from the perspective of both patients and physicians. This has led to the suggestion that a third party, such as a research nurse or data manager, should be responsible for obtaining informed consent. The objective of this study was to explore the views of data managers concerning the nature, challenges, and rewards of their role and the similarities and differences between their role and that of physicians in obtaining informed consent. METHODS: Four focus groups in three large teaching hospitals were conducted. Twenty-one data managers who were involved in cancer or pain clinical trials participated. The focus groups were audiotaped, transcribed, and subjected to content analysis to identify themes. RESULTS: Data managers identified three primary roles complementary to that of physicians: information provision, quality assurance of the informed consent process, and ongoing support during the trial. Despite expressed concern that medical and drug company interests may lead to subtle coercion of the patient, participants did not support the notion that they may be solely responsible for the consent process. Participants described a range of ethical dilemmas they confronted, including patients asking them for medical details they could not provide and situations in which they felt that informed consent was compromised in some way, for example, dealing with situations in which the patient appeared to be entering the trial for the wrong reasons due to misunderstanding, need, or passivity. Effective functioning of the multidisciplinary team assisted data managers in performing their role. A range of training needs were identified, particularly communication skills training and trial start-up briefing. CONCLUSIONS: The issues raised by these data managers have important implications for the successful conduct of clinical trials, particularly the need for an integrated, multidisciplinary approach at all levels of the informed-consent process.

Adult↗

PubMed2002

Improving doctors' letters.

Information contained in letters of referral and reply often does not meet the information needs of letter recipients. Missing reports of previous investigations and insufficient detail in the referral letter to specialists are the most serious and common problems. General practitioners prefer structured, computer-generated letters to unstructured, dictated letters. Referring surgeons and GPs identify delay in receiving the reply letter and insufficient detail as relatively common problems after a new patient consultation. They want the reply letter to describe the proposed treatment, expected outcomes and any psychosocial concerns, yet these items are often omitted. A letter content and format prompt card has the potential to enhance the quality of correspondence between medical specialists and referring doctors. Specialist medical bodies should consider preparing prompt cards (setting out preferred information content and format for letters) to distribute to their members.

Correspondence as Topic↗

PubMed2002

When the treatment goal is not cure: are cancer patients equipped to make informed decisions?

PURPOSE: Informed decision making now is considered the underpinning of ethical medical practice. We aimed to determine the extent to which patients with incurable cancer are adequately informed of their prognosis and treatment options and encouraged to participate in treatment decisions. PATIENTS AND METHODS: One hundred eighteen cancer patients with incurable disease presenting for an initial consultation with one of nine oncologists at two Sydney tertiary referral hospitals participated in the study. Consultations were recorded on audiotape to permit a content analysis of doctor-patient interactions. We devised a coding system to assess disclosure of information and to evaluate doctor encouragement of patient participation in treatment decision making. Patient recall, satisfaction, anxiety, and perceptions of the decision-making process were assessed to determine the effects of informed decision making on patient outcomes. RESULTS: Most patients were informed about the aim of anticancer treatment (84.7%), that their disease was incurable (74.6%), and about life expectancy (57.6%). An alternative to anticancer treatments was presented to 44.1%, 36.4% were informed about how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Oncologists checked patient understanding in only 10.2% of consultations. Although greater information disclosure did not seem to elevate anxiety levels, greater patient participation in the decision-making process was associated with increased anxiety levels (P =.0005), which persisted over a 2-week time span. CONCLUSION: Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to anticancer treatment. These gaps invite the question concerning whether patients are led toward anticancer treatment.

Adult↗

PubMed2002

Insights from cancer patient communication research.

Good communication skills are essential for all aspects of patient care in a palliative setting. A considerable body of evidence has accrued in the general oncology literature concerning doctor-patient and doctor-doctor communication. Many of the models and methods explored in the oncology setting may be applied usefully to palliative care; however palliative care is unique in some aspects and has its own particular challenges. Further evidence is needed to guide palliative care and other health care professionals in communicating effectively and sensitively with palliative care patients while holding a balance between telling the truth and maintaining hope.

Communication↗

PubMed2002

Consultation audio tapes: an underused cancer patient information aid and clinical research tool.

Patients with cancer are known to value consultation audio tapes as an information aid and frequently accept the offer to tape record their consultations with oncologists. Systematic reviews have shown that providing patients with an audio tape of their consultations improves how much information they remember. In surveys, many Australian doctors were unenthusiastic about providing consultation audio tapes to patients citing issues such as patient confidentiality and medico-legal concerns as reasons for their reluctance. In addition to clinical benefits, consultation audio tapes are a valuable research tool for documenting information provision and analysing the interactions between patients and oncologists. For example, audio tapes of clinical-trial consultations have raised concerns about the quality of informed consent given by patients. Consultation audio tapes have also been used to monitor strategies for improving patient understanding. In three randomised trials, provision of a question prompt sheet significantly increased the number of questions asked by patients about their prognosis, suggesting that this topic was not generally discussed adequately. Oncologists should consider installing audiotaping facilities and offer all patients a tape of their consultation. Furthermore, scientists who investigate doctor-patient interactions should consider using consultation audio tapes as a research tool.

Humans↗

PubMed2002

Responding to the active and passive patient: flexibility is the key.

BACKGROUND: Patients vary widely in their preferences and capacity for participation in medical decision-making. This study aimed to document oncologist responses to more extreme presentations and identify helpful and unhelpful strategies for clinicians. PATIENTS AND METHODS: A trained actor played the role of a patient with early stage breast cancer who was attending her first consultation with a medical oncologist. She adopted in random order two different consultation participation styles: that of a very anxious, active patient, and that of a depressed, passive patient. Medical consultations between the actor and 16 medical oncologists were videotaped and then analysed qualitatively by two trained raters. RESULTS: Strategies that facilitated shared decision-making with both patient types and were positively endorsed by the actor/patient included explicit agenda-setting, active listening, checking understanding, endorsing question-asking, offering decisional delay, and non-verbal behaviours conveying empathy and warmth. Oncologists successfully negotiated with the active patient to share control of the consultation, and responded to emotional cues from the passive patient. Unhelpful strategies were also identified. CONCLUSIONS: Few clinicians receive training in responding to differing communication styles in their patients that could potentially cause conflict and hinder optimal treatment decision-making. This study suggests some useful strategies for oncologists to consider, to widen their behavioural repertoire in the cancer consultation.

Adult↗

PubMed2002

Medical tests: women's reported and preferred decision-making roles and preferences for information on benefits, side-effects and false results.

OBJECTIVE: To determine women's preferences for and reported experience with medical test decision-making. DESIGN: Computer-assisted telephone survey. SETTING AND PARTICIPANTS: Six hundred and fifty-two women resident in households randomly selected from the New South Wales electronic white pages. MAIN OUTCOME MEASURES: Reported and preferred test and treatment (for comparison) decision-making, satisfaction with and anxiety about information on false results and side-effects; and effect of anxiety on desire for such information. RESULTS: Overall most women preferred to share test (94.6%) and treatment (91.2%) decision-making equally with their doctor, or to take a more active role, with only 5.4-8.9% reporting they wanted the doctor to make these decisions on their behalf. This pattern was consistent across all age groups. In general, women reported experiencing a decision-making role that was consistent with their preference. Women who had a usual doctor were more likely to report experiencing an active role in decision-making. More women reported receiving as much information as they wanted about the benefits of tests and treatment than about the side-effects of tests and treatment. Most women wanted information about the possibility of false test results (91.5%) and test side-effects (95.6%), but many reported the doctor never provided this information (false results = 40.0% and side-effects = 31.3%). A substantial proportion said this information would make them anxious (false results = 56.6% and side-effects = 43.1%), but reported they wanted the information anyway (false results = 77.6% and side-effects = 88.1%). CONCLUSIONS: Women prefer an active role in test and treatment decision-making. Many women reported receiving inadequate information. If so, this may jeopardize informed decision-making.

Adult↗

PubMed2002

Pediatricians' attitudes toward randomized controlled trials involving children.

OBJECTIVE: To examine pediatricians' attitudes toward children's participation in randomized controlled trials (RCTs) and identify possible barriers to participation. STUDY DESIGN: Qualitative analysis of focus group discussions involving 16 pediatricians and 5 trainees from a pediatric teaching hospital in Australia. Doctors varied in occupation, experience, research activity, age, sex, ethnicity, and parenthood experience. A professional facilitator conducted the semistructured group discussions. The transcribed audiotapes were analyzed by theme linkage by using the constant comparative method. RESULTS: Pediatricians believed parents balanced perceived gains and risks when deciding about trial participation. They thought the child's condition, parents' health beliefs and personal attributes, and the doctors' beliefs and relationship with the investigators influenced parents' attitudes. Perceived gains included professional benefits for pediatricians, improved patient care, convenience for the families and themselves, and scientific advancement. Perceived risks included inconvenience, inadequate resources, and potential harms to the patient and doctor-patient relationship. Pediatricians with previous research experience were most knowledgeable about RCTs and perceived greatest gains from trial participation. Pediatricians' personal treatment preferences hindered trial support. CONCLUSIONS: This study suggests that children's participation in trials will be enhanced by increasing pediatricians' awareness of RCTs through education and involvement in trials and by improving the gains-risk balance.

Adult↗

PubMed2001

When the treatment goal is not cure: are patients informed adequately?

We determined the extent to which Australian patients with incurable cancer are informed of their prognosis and treatment options by their oncologists and are encouraged to participate in treatment decisions. To this end, 118 patients with incurable cancer presenting for an initial consultation with one of nine oncologists in two Sydney teaching hospitals were enrolled in the study. Consultations were audio-taped. We developed a coding system to assess the disclosure of information considered necessary to equip patients to make informed decisions and to evaluate doctor encouragement of patient participation in treatment decision-making. Patient recall, satisfaction, and anxiety and their perceptions of the decision-making process were assessed. Most patients were informed about the aim of cancer treatment (84.7%), that their disease was incurable (74.6%) and about life expectancy (57.6%); 44.1% were presented with an alternative to cancer treatments, such as supportive care, 36.3% were informed how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Patient understanding was checked in only 10% of consultations. While greater information disclosure did not appear to elevate anxiety levels, greater patient participation in the decision making process was associated with increased anxiety levels ( P=0.0005), which persisted over a 2-week time span. Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to cancer treatment.

Adult↗