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Biomedical subjects

P Butow

Publications and source records attributed to P Butow.

At least 19 recordsLinked to original sources
PubMed2007

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure).

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.

Adult↗
PubMed2007

Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN).

BACKGROUND: Partners of cancer patients typically provide the majority of patients' emotional and physical care. Partners may be profoundly affected by the cancer and may experience ongoing supportive care needs across the survivorship continuum. Research has been restricted by a lack of psychometrically evaluated measures and in this study, a self-report measure of partners' needs was developed and empirically evaluated. METHODS: Questionnaire items generated from a qualitative study were constructed into a 47- item unmet need measure (Cancer Survivors' Partners Unmet Needs measure, CaSPUN). The psychometric properties of the CaSPUN were evaluated in 212 partners of patients who had been diagnosed with cancer 1-11 years earlier and were currently disease-free. RESULTS: The CaSPUN was modified to include 35 unmet need items, 6 positive change items and an open ended item. The CaSPUN demonstrates a high level of acceptability, internal consistency and construct validity, although test-retest reliability was moderate. Factor analysis identified five discrete factors: (1) Relationships, (2) Information, (3) Partner Issues, (4) Comprehensive Care and (5) Emotional Support. CONCLUSIONS: The CaSPUN permits the identification of long-term supportive care needs in generic populations of cancer survivors' partners and will assist with the formulation of recommendations regarding required supportive care services.

Adult↗
PubMed2006

A pilot study to evaluate the impact of involving breast cancer patients in the multidisciplinary discussion of their disease and treatment plan.

Multidisciplinary care is the accepted best model of management of breast cancer patients. Current evidence suggests that multidisciplinary care has the potential to reduce mortality, improve quality of life, and reduce health care costs. We investigated the impact of patient involvement in the multidisciplinary meeting. A pilot study was conducted to assess the feasibility and acceptability of directly involving patients diagnosed with breast cancer in multidisciplinary clinic discussions and treatment planning. 30 consecutive breast cancer patients presenting for surgery were invited to attend our weekly multidisciplinary breast meeting at the time of receiving their results of surgery. Patients completed questionnaires before and after the meeting, and participated in a tape-recorded interview with the breast care nurse after the meeting. Members of the multi-disciplinary team also completed a short survey at the end of the study. The intervention was highly valued by most of the participating patients; and acceptable to and welcomed by most health professionals in the multidisciplinary team. Change in anxiety scores was not affected by participation. Patient attendance at the breast multidisciplinary meeting was shown to be potentially acceptable to both patients and health professionals, without unduly raising patient anxiety. A national survey exploring attitudes towards patient involvement in the multidisciplinary team meeting is currently in progress.

Adult↗
PubMed2006

Life after cancer: couples' and partners' psychological adjustment and supportive care needs.

GOALS OF WORK: Partners of cancer patients may experience significant distress at the time of treatment and many may experience persistent difficulties, although little research has examined their longer term psychosocial outcomes or supportive care needs. MATERIALS AND METHODS: One hundred and fifty-four cancer survivors who were 1-11 years post diagnosis and disease-free and their partners completed mailed questionnaires. MAIN RESULTS: A positive relationship was found between psychological distress and supportive care needs both within and between partner and survivor samples. Partners reported high levels of anxiety and supportive care needs, most frequently concerning relationships and the impact of the cancer illness. Partners within couples reported both shared and unique needs, although agreement on ratings of shared needs was low. Needs did not diminish over time although partners demonstrated psychological resilience and reported positive outcomes. Predictors of distress and unmet needs were explored: physical QOL, relationship satisfaction, and total needs contributed to variability in partners' distress; relationship satisfaction and total needs were associated with survivors' distress. Distress and relationship satisfaction were associated with partners' unmet needs; only distress was associated with survivors' unmet needs. CONCLUSIONS: Partners are not merely providers of support, but need support themselves many years after a cancer diagnosis and in the context of apparently cured disease. The quality of the dyadic relationship may be critical in determining both partner and survivor distress and needs, and may prove a useful target for psychosocial interventions.

Adaptation, Psychological↗
PubMed2005

Audio recordings of consultations with doctors for parents of critically sick babies.

BACKGROUND: Family centred care is an important part of neonatal intensive care. Ensuring effective communication in the neonatal intensive care unit (NICU) is a challenge but is crucial to the implementation of family centred care. Providing parents in NICU with audiotape recordings of their conversations with neonatologists could promote effective communication. OBJECTIVES: The objective of this review was to assess the usefulness of providing parents of sick babies with audiotape recordings of their consultations with neonatologists. SEARCH STRATEGY: The standard search strategy of the Cochrane Neonatal Review Group was used. This included searches of electronic databases: Oxford Database of Perinatal Trials, Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library Issue 3, 2004), and MEDLINE (1966 - February 2004); and previous reviews including cross references and expert informants. There were no language restrictions applied to the electronic searches. Hand searching of conference and symposia proceedings was restricted to the English language. SELECTION CRITERIA: Randomised or quasi-randomised trials of any form of providing parents of babies in NICU with audiotape recordings of their conversation with doctors in the NICU. DATA COLLECTION AND ANALYSIS: Four reviewers independently assessed the eligibility of the trials. MAIN RESULTS: Our searches did not identify any trials which met the eligibility criteria. AUTHORS' CONCLUSIONS: There is no information available from randomised or quasi-randomised trials to demonstrate any benefits from providing parents in NICU with audiotape recordings of their conversations with neonatologists.

Critical Care↗
PubMed2005

Discrete-choice experiment to measure patient preferences for the surgical management of colorectal cancer.

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

Choice Behavior↗
PubMed2005

How to recognize and manage psychological distress in cancer patients.

Psychological distress is common in cancer patients, however, it is often unrecognized and untreated. We aimed to identify barriers to cancer patients expressing their psychological concerns, and to recommend strategies to assist oncologists to elicit, recognize, and manage psychological distress in their patients. Medline, Psychlit, and the Cochrane databases were searched for articles relating to the detection of emotional distress in patients. Patients can provide verbal and non-verbal information about their emotional state. However, many patients may not reveal emotional issues as they believe it is not a doctor's role to help with their emotional concerns. Moreover, patients may normalize or somatize their feelings. Anxiety and depression can mimic physical symptoms of cancer or treatments, and consequently emotional distress may not be detected. Techniques such as active listening, using open questions and emotional words, responding appropriately to patients' emotional cues, and a patient-centred consulting style can assist in detection. Screening tools for psychological distress and patient question prompt sheets administered prior to the consultation can also be useful. In conclusion, the application of basic communication techniques enhances detection of patients' emotional concerns. Training oncologists in these techniques should improve the psychosocial care of cancer patients.

Anxiety↗
PubMed2004

The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors.

Due to improvements in medical treatment and survival following breast cancer, researchers have turned their attention to investigating the needs of breast cancer survivors. There is disagreement about the extent to which survivors continue to experience psychological morbidity after treatment ends. Whilst the majority of women adjust well to breast cancer, some may have continued psychosocial needs. Available research suggests that younger pre-menopausal women are at increased risk of psychological morbidity following breast cancer. The present study aimed to gather preliminary qualitative data on the psychosocial needs of breast cancer survivors and to identify the shared and unique needs of younger versus older survivors. A qualitative methodology was chosen as this was a relatively unexplored area of enquiry. Patients treated for early-stage breast cancer who had completed their hospital-based treatment 6-24 months prior to participation were recruited. Sampling was discontinued when informational redundancy was achieved. Eighteen telephone interviews were conducted. A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors including support needs, psychological needs, practical needs, physical needs and information needs. Younger women reported more needs than their older counterparts. Several needs reported by younger women were directly related to being of younger age or pre-menopausal at the time of diagnosis. Clinical implications are discussed.

Adaptation, Psychological↗
PubMed2003

Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients.

Question prompt lists (QPLs) have been shown to be an inexpensive and effective communication tool for patients in oncology consultations. We aimed to develop and pilot a QPL for palliative care (PC) patients. In order to identify suitable questions for inclusion in the QPL, we conducted focus groups and individual interviews with 19 patients, 24 carers and 22 PC health professionals. A further 21 health professionals reviewed the draft document. The draft QPL was piloted in 23 patients. In total, 112 questions were identified and grouped into eight categories. All participants felt that the QPL, in booklet form, could be a useful tool. Out of 23 patients in the pilot study, 22 agreed that the QPL was helpful, contained useful questions, was easy to understand and would be useful in the future. State anxiety (STAI) decreased after receiving the booklet and seeing the doctor in 16 out of 19 patients (overall anxiety decreased by a median of 8, IQR 1-13). Participants in the pilot study endorsed the inclusion of end-of-life issues in the QPL, despite some reservations expressed about this by health professionals in the individual interviews. We have identified a specific QPL that might facilitate useful dialogue between PC patients and their doctor. The QPL has strong support from patients, their carers and relevant health professionals.

Adult↗
PubMed2003

Attitudes to prophylactic surgery and chemoprevention in Australian women at increased risk for breast cancer.

BACKGROUND: Because of the uncertain efficacy of breast cancer screening in women at increased risk of developing breast cancer, bilateral prophylactic oophorectomy and mastectomy are considered management options for high-risk women. Data on the attitudes to prophylactic strategies of high-risk women who have not attended specialist clinics are needed to ascertain the need for patient education and provide the basis for planning of support services. METHODS: Three hundred seventy-one women unaffected by cancer and with unknown mutation status from families with a dominantly inherited susceptibility to breast cancer, recruited through a large Australian population-based, epidemiological study, were assessed using a mailed self-administered questionnaire with validated measures of psychological outcome. RESULTS: Sixteen percent of women reported considering prophylactic mastectomy, and 1% had already had the procedure. Among women with a family history of breast/ovarian cancer, 33% had considered and 5% had already had a prophylactic oophorectomy. Twenty-three percent of women reported considering taking tamoxifen if it were shown to prevent breast cancer. Consideration of prophylactic oophorectomy (OR = 1.51 for a 10% change in perceived risk, 95% CI 1.14-1.99, p = 0.0045) and tamoxifen (OR = 1.14 for a 10% change in perceived risk, 95% CI 1.002-1.30, p = 0.047) were positively associated with perceived cancer risk. CONCLUSIONS: Attitudes to prophylactic surgery and psychological distress levels in high-risk women participating in an epidemiological study appear to be comparable to those of women attending familial cancer clinics and indicate that women attending high-risk clinics may be representative of the larger population of women at increased risk.

Adult↗
PubMed2003

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.

Adult↗
PubMed2002

Psychological impact of prophylactic oophorectomy in women at increased risk of developing ovarian cancer: a prospective study.

OBJECTIVES: The objectives of this study were twofold: to prospectively assess whether expressed intention to undergo prophylactic oophorectomy translated into uptake and to evaluate the psychological impact of the procedure in a sample of unaffected women with a strong family history of breast/ovarian cancer. METHODS: Ninety-five women, initially assessed at the time of their first attendance at a familial cancer clinic, were followed-up 3 years later. A total of 22 women (23.2%) in this study had undergone a prophylactic oophorectomy. Ten women (10.5%) who had undergone a prophylactic oophorectomy during the 3-year follow-up period were compared to 73 women (76.9%) who did not have a prophylactic oophorectomy. Twelve women (12.6%) who had the procedure prior to study entry were also assessed for psychological adjustment and associated information needs. RESULTS: Age emerged as a significant predictor of uptake of prophylactic oophorectomy (chi(2) = 7.13, P = 0.009). Among those who had the procedure after study entry, a significant reduction in ovarian cancer anxiety was observed (Z = -2.19, P = 0.029). Of the 22 women who had undergone a prophylactic oophorectomy in total (both before and after study entry), 86.4% reported a high degree of satisfaction with their decision to have the procedure. A low level of screening uptake was also reported by women who did not have a prophylactic oophorectomy but for whom screening was recommended. CONCLUSION: Findings demonstrate that prophylactic oophorectomy is successful in reducing anxiety about ovarian cancer. The results also suggest that women perceive that the benefit of anxiety reduction may outweigh the potentially adverse effects of the procedure, given that women expressed a high level of satisfaction with their decision.

Adult↗
PubMed2002

Psychological impact of genetic testing in women from high-risk breast cancer families.

Psychological adjustment in 90 women (30 carriers and 60 non-carriers) who had undergone genetic testing for mutations in BRCA1 and BRCA2 breast/ovarian cancer susceptibility genes was compared with that of 53 women who were not offered genetic testing. Women were assessed prior to genetic testing and 7-10 days, 4 and 12 months after carrier status disclosure using self-administered questionnaires. Compared with women not offered testing, mutation carriers had significantly higher breast cancer distress 7-10 days (t=2.80, P=0.005) and 12 months (t=2.01, P=0.045) post-notification. Non-carriers showed a significant decrease in state anxiety 7-10 days post-notification (t=2.27, P=0.024) and in depression 4 months post-notification (t=2.26, P=0.024), compared with women not offered testing. These data show that non-carriers derive psychological benefits from genetic testing. Women testing positive may anticipate a sustained increase in breast cancer distress following disclosure, although no other adverse psychological outcomes were observed in this group.

Adult↗
PubMed2002

Communicating in a multicultural society. II: Greek community attitudes towards cancer in Australia.

BACKGROUND: Open and full disclosure of information regarding diagnosis and prognosis is the prevailing approach to cancer patients. However, such a view appears contrary to the preferences of many ethnic groups in Australia. AIMS: This study sought to examine the range of attitudes to cancer, its treatment and disclosure of information among unaffected Greek adults, as part of an ongoing project to develop culturally appropriate cancer care in Australia. METHODS: Respondents were recruited from first generation Australian residents. Twenty-nine men and 29 women, half over and half under the age of 60 years, participated. Eight focus groups were conducted by a bilingual facilitator and supplemented with eight individual face to face interviews. RESULTS: Several areas of misunderstanding were identified concerning the causes and outcomes of cancer. Having a cancer was regarded as a source of shame. Disclosure of diagnosis, but less so prognosis, was favoured, and only to immediate family members. Family members translating for the doctor were reported to commonly alter or 'soften' the doctor's message without the patient's knowledge in order to protect the patient. Greek doctors were favoured, and open discussion of alternative medicines was sought. CONCLUSIONS: The Greek community is the most established migrant community in Australia, but clearly many of their attitudes to cancer are at variance with what is considered good practice by clinicians. An increased awareness of cultural differences is needed to achieve optimal health outcomes in the diverse communities that make up modern Australia.

Adult↗
PubMed2001

Discussing adjuvant cancer therapy.

PURPOSE: To document the adequacy of patient information in oncology consultations concerning adjuvant therapy and explore predictors of physician communication patterns, treatment decisions, patient information recall, and satisfaction. PATIENTS AND METHODS: Retrospective analysis of audiotapes and verbatim transcripts of 101 initial adjuvant therapy consultations with medical and radiation oncologists was undertaken. Content analysis, data on communication patterns, treatment decisions, patient anxiety, satisfaction, and information recall were collected. Predictors of physician communication, treatment decisions, recall, and satisfaction with the consultation were identified. RESULTS: The majority of patients were well informed of their prognosis, benefits and risks of therapy, and alternative management options. Only half were asked about preferences for information or decision-making involvement. Predictors of information detail given include patient sex, age, occupation, and education. Radiation and medical oncologists express prognosis and treatment benefit using similar phrases. When offered the chance to delay decision-making, most patients do so (P <.01). Final treatment decisions appear to be influenced by the presentation of choice in treatment options by the oncologist and whether the treatment decision was made during the initial consultation (P <.01). Information recall was not influenced by communication factors. Patients receiving less detailed information had slightly higher satisfaction with the consultation (P =.03). More anxious patients tended to be less satisfied (P =.07). CONCLUSION: The optimal way to discuss adjuvant therapy is undefined. More emphasis can be placed on soliciting patient preferences for information and decision-making involvement and tailoring both to the needs of the individual patient. Providing choice in treatment and delaying decision-making may affect the patient's treatment decision.

Adult↗
PubMed2000

Breast cancer screening uptake in women at increased risk of developing hereditary breast cancer.

This multicenter study assessed breast cancer screening uptake in 461 unaffected women at increased risk of developing breast cancer on the basis of family history who approached familial cancer clinics for advice about surveillance options. At the time of attending the clinic, 89% and 90% of participants were vigilant with respect to age- and risk-specific recommendations for mammography and clinical breast examination, respectively, and 51% reported practicing breast self-examination monthly or more frequently. The degree to which health outcomes are perceived to be under one's personal control (chi2 = -2.09, p = 0.0037) and breast cancer anxiety (chi2 = 8.11, p = 0.044) were both associated with monthly or more frequent breast self-examination, while there were no associations with sociodemographic characteristics. A significantly lower percentage (56%) of women aged <30 were vigilant with respect to mammography recommendations, compared to 77%, 96% and 98% of women aged 30-39, 40-49 and >50, respectively (chi2 = 37.2, p < 0.0001). These relatively low rates of mammographic screening in young women may reflect concerns about increased cancer risk associated with early and repeated radiation exposure or lack of sensitivity in young women with radiographically dense breasts. If mammographic screening is ultimately shown to lower mortality in women at high risk, there will be a strong case to promote screening in young women. The need for regular mammographic screening would then need to be highlighted and reinforced amongst young women and their referring physicians. Awareness amongst general practitioners, who are largely responsible for referral to screening services, would also need to be increased.

Adolescent↗