Attitudes to genetic testing for breast cancer susceptibility in women at increased risk developing hereditary breast cancer.
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Adult↗
Biomedical subjects
P Butow
Publications and source records attributed to P Butow.
Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer.
PURPOSE: To assess intention to undergo prophylactic bilateral mastectomy and psychologic determinants in unaffected women at increased risk of developing hereditary breast cancer. PATIENTS AND METHODS: Three hundred thirty-three women who were awaiting their initial appointments for risk assessment, advice about surveillance, and prophylactic options at one of 14 familial cancer clinics participated in a cross-sectional, questionnaire-based survey. RESULTS: Nineteen percent of women would consider and 47% would not consider a prophylactic mastectomy, should genetic testing identify a mutation in a breast cancer-predisposing gene, whereas 34% were unsure and 1% had already undergone a prophylactic mastectomy. In a bivariate analysis, women at a moderately increased risk of developing breast cancer had the highest proportion of subjects reporting that they would consider a prophylactic mastectomy (25%), compared with women at high risk (16%) (chi(2) = 7.79; P =.051). In multivariate analyses, consideration of prophylactic mastectomy strongly correlated with high levels of breast cancer anxiety (odds ratio [OR] = 17.4; 95% confidence interval [CI], 4.35 to 69.71; P =. 0001) and overestimation of one's breast cancer risk (OR = 3.01; 95% CI, 1.43 to 6.32; P =.0036), whereas there was no association with objective breast cancer risk (P =.60). CONCLUSION: A significant proportion of women at increased risk of developing hereditary breast cancer would consider prophylactic mastectomy. Although prophylactic mastectomy may be appropriate in women at high risk of developing breast cancer, it is perhaps less so in those who have a moderately increased risk. Such moderate-risk women are likely to benefit from interventions aimed at reducing breast cancer anxiety and correcting exaggerated breast cancer risk perceptions.
Adult↗
Attitudes toward prophylactic oophorectomy and screening utilization in women at increased risk of developing hereditary breast/ovarian cancer.
OBJECTIVES: The aim of this study was to evaluate ovarian cancer screening uptake and attitudes toward prophylactic oophorectomy in women at risk of developing hereditary breast/ovarian cancer. STUDY METHODS: Ninety-five unaffected women, who approached 1 of 14 familial cancer clinics for advice about their breast/ovarian cancer risk and surveillance and prophylactic options, were assessed in a cross-sectional design when they attended the clinic. RESULTS: Among high-risk women ages 30 and over who had not had a prophylactic oophorectomy, 48% reported ever having had an ovarian ultrasound, and among women ages 50 and over 23% had had a serum CA 125 test. Twenty-three percent of women would consider, and 27% would not consider, a prophylactic oophorectomy should the genetic test indicate a germline mutation associated with hereditary breast/ovarian cancer, while 38% were unsure. Twelve percent had already undergone a prophylactic oophorectomy. Interest in prophylactic oophorectomy was associated with increased breast/ovarian cancer anxiety (chi(2) = 5.14, P = 0.023), but not objective cancer risk (chi(2) = 0.40, P = 0.53). CONCLUSION: Findings demonstrate that breast/ovarian cancer anxiety, rather than objective risk, is the major factor which determines women's attitude to prophylactic oophorectomy. Women are likely to benefit from interventions aimed at reducing breast/ovarian cancer anxiety. Research on the impact of prophylactic oophorectomy would be helpful in the development of educational strategies and decision aids to assist women who are trying to make a decision under conditions of uncertainty.
Adult↗
Attitudes and information needs of Chinese migrant cancer patients and their relatives.
BACKGROUND: The information needs of ethnic minorities often differ from that of the dominant culture, leading to dissatisfaction among both patients and health professionals. AIMS: This research project aims to identify attitudes towards cancer and associated information and communication needs of Chinese patients and their relatives in Sydney, thereby providing a framework for the provision of culturally appropriate cancer care for Chinese-Australians. METHODS: A qualitative data collection strategy was selected as the most appropriate method, because no validated measures are available and no previous research has examined attitudes and needs of Chinese-Australian cancer patients. Patients were recruited from three major teaching hospitals in Sydney and from a Chinese cancer support organisation. Sampling was discontinued when informational redundancy was achieved. Four focus groups and 26 individual telephone interviews were conducted with a total of 36 cancer patients and 12 relatives born in China, Singapore and Malaysia. RESULTS: While individual differences were observed, a majority view was expressed on a range of issues. Non-disclosure of a poor prognosis was favoured, and the role of the family in liaising between health professionals and the patient was emphasised. Patients preferred a confident and clear diagnosis and treatment recommendation. Most patients wished to incorporate Chinese culture-specific treatments into their care. The need for interpreters and psychological and spiritual support was emphasised. CONCLUSIONS: Providing information in a culturally sensitive manner will assist doctors in providing optimum care and support for ethnic minority groups in this country.
Attitude to Health↗
Information booklets about cancer: factors influencing patient satisfaction and utilization.
Providing patients with adequate information is an important component of care. This exploratory study investigated factors influencing patient satisfaction with and utilization of information booklets. The research was conducted in two stages. In stage 1, five commonly used cancer information booklets were reviewed by 36 Australian patients who were either receiving chemotherapy or had just completed treatment. Data were collected on patient satisfaction with, preference for and utilization of information booklets. In addition data were collected on variables identified in the literature as potentially influencing patient satisfaction, including patient characteristics, presentation and readability of booklets, and the timing of provision. A high level of satisfaction was found for all five information booklets, although a clear preference for one particular booklet emerged. The most notable feature of this booklet was its readability level (grade 8); in contrast the other booklets were written at levels equivalent to grades 11-12. Stage 2 focused on the side effects of patient information preference style on their satisfaction and recall of information presented in two booklets in the course of their treatment. No differences were found between patients who seek information and those who avoid it. The findings of this study suggest that patients' information needs may be better met if information booklets are written in plain English, and presented to patients prior to treatment. Future studies incorporating a larger sample of patients and greater selection and variety of information booklets are required to further determine if patient characteristics and features of booklet presentation influence patient satisfaction and preference.
Adolescent↗
Meeting patient expectations in the cancer consultation.
BACKGROUND: Low scores on satisfaction measures may be anticipated when patients' expectations of the doctor are unmet during the cancer consultation. We correlated discrepancies between patient expectations of their ideal doctor and their perceptions of their actual doctor with scores on a validated satisfaction scale to determine whether patients whose expectations were unmet were less satisfied. PATIENTS AND METHODS: The expectations questionnaire used a forced choice method designed to elicit patient preferences for either emotional or informational support from the physician. One hundred and five new patients with heterogeneous cancers, of five medical oncologists at a major teaching hospital were sampled. The patients were mostly female (55%) middle aged (mean age 54.3) and newly diagnosed with cancer (56% within two months prior to consultation). RESULTS: Patients did not demonstrate a clear preference for an emotionally or informationally supportive approach. Seventy percent of patients did not want emotionally negative physicians but most (88.4%) would tolerate negative information. The mean number of exact matches between patients expectations of the ideal and their perceptions of their actual doctor was 3.7 (from a total of six). 5.9% of patients received exactly the doctor they wanted. No significant differences in satisfaction were found between patients whose expectations were met and those whose expectations were not met. CONCLUSIONS: Patient satisfaction with the consultation was independent of patient expectation for informational or emotional support.
Adult↗
Cognitive processes in dieting disorders.
This study is an empirical investigation of the prevailing notion that dieting disorder patients have more dysfunctional cognitions and cognitive styles than the nonclinical population. Groups of anorexics, bulimics, normal restrainers, and normal nonrestrainers completed three questionnaires and two repertory grids. Overall, the data supported a cognitive model of dieting disorders. Patients exhibited a lack of awareness of the role played by inner sensations in regulating weight and eating behavior, and emphasized black and white rules instead. Anorexic patients tended to evaluate self-worth almost entirely in terms of self-control. Both patient groups evidenced extreme negativity in their views of themselves, but anorexics showed a particularly severe sense of self-isolation. Unlike bulimics, they extended a tendency to think in absolute terms from the area of eating to the rest of their lives. Thus, the psychopathology of the anorexic patient group appeared more severe than that of bulimics.
Adult↗
On the receiving end. IV: Validation of quality of life indicators.
Four measures of patient functioning and a mood adjective list currently used in trials of the International Breast Cancer Study Group (IBCSG), and an 8-item Linear Analogue Self Assessment (LASA) instrument measuring specific side effects of cancer and cancer treatment (GLQ-8), were cross-validated against three established measures of quality of life, mood and psychological adjustment to cancer, in a heterogeneous sample of cancer patients. Correlations between new and established measures were high, indicating good convergent and concurrent validity. Compliance on the longer mood measures was relatively poor. Despite the difficulty in developing direct and methodologically sound measures of quality of life, the regular inclusion of practical indicators of aspects of quality of life in clinical trials would allow improved assessment of the cost-benefit ratio of treatment to outcome in cancer patients.
Adaptation, Psychological↗
A comparison of nutritional management with stress management in the treatment of bulimia nervosa.
In a comparison of nutritional management (NM) and stress management (SM) for treatment of bulimia nervosa, 55 female patients were randomly assigned to either treatment. Therapy consisted of 15 sessions in a group over three months, by the end of which, patients under both treatment conditions showed a significant reduction in the frequency of binge eating and vomiting and a significant improvement in various psychopathological features such as body dissatisfaction and depression. All improvements were maintained over 12-month follow-up NM produced a more rapid improvement in general eating behaviour, a faster reduction in binge frequency and a higher abstinence rate from binge eating. SM led to greater positive changes in certain psychopathological features such as feelings of ineffectiveness, interpersonal distrust and anxiety. NM should be regarded as a necessary first intervention in all bulimic patients. Further psychological therapy, such as SM, is indicated as well for some patients, depending on their specific psychological difficulties.
Adaptation, Psychological↗
'Someone who cares:' a qualitative investigation of cancer patients' experiences of psychotherapy.
Although psychotherapy for cancer patients is known to be effective, there is little in the research to indicate what elements of their therapy patients find most helpful. To explore this question, we interviewed cancer patients diagnosed with metastatic disease who had been offered two different forms of individual psychotherapy as part of a larger funded study. These interviews were then transcribed and analysed using grounded theory. Our aim was to explore patients' psychotherapy experience from their perspective and to determine what common elements in the two approaches they felt were of greatest benefit. Results indicated that patients offered cognitive behavioural therapy had similar experiences to those who received a type of relaxation therapy that included time for non-specific, patient-centred 'chat'. Central to participants' experiences was the opportunity both therapies gave them to enter a relationship in which they could safely share their thoughts and feelings with someone who seemed genuinely interested in understanding their cancer experience and 'truly cared'. These findings suggest that the unique perspectives of cancer patients can add considerably to our understanding of individual psychotherapy in cancer care settings and how this might be improved.
Adult↗
Post-treatment sexual adjustment following cervical and endometrial cancer: a qualitative insight.
There is an increasing number of long-term survivors of cervical and endometrial cancer for whom quality of life is of major importance. We interviewed 20 women (aged 19-64) to explore the dynamics and components of post-treatment sexual adjustment and its impact on quality of life. Stratification by treatment received (surgery alone, surgery plus external-beam radiation, surgery plus brachytherapy, and surgery plus external-beam radiation and brachytherapy) and time since treatment (immediately post treatment, during the next 2 years and thereafter) was undertaken, to ensure representation of all relevant experiences and views, and to allow time for any long-term side effects to appear. The NUD*IST software (Non-numerical Unstructured Data by Indexing, Searching and Theorising) was used to assist with the coding of audio-taped, transcribed interviews and to search for themes and segments. While the data supported findings reported in the literature, important new themes emerged in the course of the qualitative analysis. These included: (a). issues related to being 'feminine', (b). the role of intimacy in post-treatment adjustment and (c). the importance of communication between health professionals, patients and partners. A model is presented that integrates these issues and highlights the need for effective interventions to improve post-treatment outcomes. The provision of information, support and modification of rehabilitation devices is suggested.
Adaptation, Psychological↗
Psychological impact of genetic counselling and testing in women previously diagnosed with breast cancer.
BACKGROUND: The recent discovery of susceptibility genes relating to breast cancer, BRCA1 and BRCA2, now allows women with breast cancer and a family history of breast/ovarian cancer to undergo genetic testing to identify a causative germ-line mutation. The present study assessed the psychological status over time of women affected by breast cancer requesting genetic testing (cases; n = 32) compared with matched controls (n = 28). METHODS: Subjects were recruited through two Sydney-based hospitals. Data were collected via questionnaire and telephone interview at baseline, and 2 weeks and 3-6 months following counselling. RESULTS: Genetic test results were not received by the subjects within the study period. Cases showed a greater increase in knowledge of cancer genetics following counselling compared with controls, and this was maintained over time. Psychological symptoms remained stable over the study period and there were no differences between groups. CONCLUSIONS: Increased knowledge following genetic counselling was not accompanied by an increase in anxiety or depression. Further assessment will be required in the long term to determine the psychological impact of receiving a genetic test result.
Adult↗