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Purpose: To determine the experiences, information, support needs and quality of life of women in the UK living with metastatic breast cancer (MBC) to provide content for educational materials. Methods: An online survey, hosted for 3 months on a UK MBC charity website, comprised sections covering issues such as communication about MBC treatment and management, helpful and less helpful things that healthcare professionals, family and friends did or said and completion of the Patient Roles and Responsibilities Scale (PRRS). Results: A total of 143 patients participated; 48/143(33%) presented de novo; 54/143(38%) had been living with MBC > 2 years. PRRS analysis revealed that MBC imposed a serious impact upon most respondents’ own caring abilities and social lives. A majority 98/139 (71%) wished they had known more about MBC before their diagnosis; 63/134(47%) indicated that they still did not fully understand their illness; merely 78/139(56%) had access to a specialist nurse and only 69/135(51%) had been offered any additional support. Respondents reported little consideration given to their lifestyle/culture during consultations and inconsistent information, support services, continuity of care or access to clinical trials. They commented upon things health care professionals/friends and family did or said that were useful and cited other behaviours that were especially unhelpful. Conclusions: MBC exerted a deleterious impact upon patients’ activities of daily living which were exacerbated in part by significant gaps in support, communication and information. Implications for cancer survivors: LIMBER results are informing the content of educational materials currently being developed for patients’ formal and informal carers. [ABSTRACT FROM AUTHOR]

Purpose: To compare participants' knowledge about gene expression profiling (GEP) tests and recurrence risks after reading an information leaflet with that following viewing of an information film. Methods: Using a randomised cross-over design, at time-point one (T1), women aged 45–75 years without breast cancer either read leaflets or watched information films about Oncotype DX or Prosigna tests. Participants answered nine questions assessing knowledge (maximum score 18). Next-day information in the opposite modality was provided and knowledge re-assessed. Additional questions probed which format was easiest to understand, participants' preferences for film or leaflet and their reasons for these. Results: 120 women participated (60 received OncotypeDX films and leaflets; 60 received the Prosigna versions). T1 mean knowledge scores were higher following film viewing (13.37) compared with that after reading leaflets (9.25) (mean difference 4.1; p < 0.0001; 95% CI 3.2, 5.0). When participants read leaflets first and subsequently viewed films, all increased their scores (mean + 6.08, from T1 of 9.25, p < 0.0001; 95% CI 5.44, 6.72). When films were viewed first, followed by leaflets, (36/60, 60%), participants' scores declined (mean-1.55 from T1 of 13.37, p < 0.001; 95% CI -2.32, -0.78). A majority of participants expressed preferences for the films (88/120, 73.3%) irrespective as to whether they described OncotypeDX or Prosigna. Reasons included the clarity, ease of understanding, visual material and reassuring voice-over. Conclusion: Discussions between oncologists and patients about recurrence risk results can be challenging. Information leaflets may aid understanding but often employ complex language. Information films significantly improved knowledge and were preferred by participants. [ABSTRACT FROM AUTHOR]

Background: Digital health provides solutions that capture patient-reported outcomes (PROs) and allows symptom monitoring and patient management. Digital therapeutics is the provision to patients of evidence-based therapeutic interventions through software applications aimed at prevention, monitoring, management, and treatment of symptoms and diseases or for treatment optimization. The digital health solutions collecting PROs address many unmet needs, including access to care and reassurance, increase in adherence and treatment efficacy, and decrease in hospitalizations. With current developments in oncology including increased availability of oral drugs and reduced availability of healthcare professionals, these solutions offer an innovative approach to optimize healthcare resource utilization. Design: This scoping review clarifies the role and impact of the digital health solutions in oncology supportive care, with a view of the current segmentation according to their technical features (connection to sensors, PRO collection, remote monitoring, self-management in real time...), and identifies evidence from clinical studies published about their benefits and limitations and drivers and barriers to adoption. A qualitative summary is presented. Results: Sixty-six studies were identified and included in the qualitative synthesis. Studies supported the use of 38 digital health solutions collecting ePROs and allowing remote monitoring, with benefits to patients regarding symptom reporting and management, reduction in symptom distress, decrease in unplanned hospitalizations and related costs and improved quality of life and survival. Among those 38 solutions 21 provided patient self-management with impactful symptom support, improvement of QoL, usefulness and reassurance. Principal challenges are in developing and implementing digital solutions to suit most patients, while ensuring patient compliance and adaptability for use in different healthcare systems and living environments. Conclusions: There is growing evidence that digital health collecting ePROs provide benefits to patients related to clinical and health economic endpoints. These digital solutions can be integrated into routine supportive care in oncology practice to provide improved patient-centered care. [ABSTRACT FROM AUTHOR]

Purpose: Gene expression profiling (GEP) test scores calculate risks of recurrence and likely benefit of adjuvant chemotherapy in ER-positive, HER2-negative, early-stage breast cancer. As health literacy and numeracy skills in the general population are poor, healthcare professionals (HCPs) require a wide repertoire of communication skills to explain clearly risk of recurrence scores (RSs) and uncertainty. We developed and evaluated an educational program for HCPs discussing GEP test results and adjuvant treatment. Methods: Eight-hour workshops contained elements aimed at improving knowledge, communication skills and self-awareness; these included the science underpinning GEP tests, an interactive risk psychology lecture, exercises and facilitated group discussions regarding seven filmed scenarios involving discussions about high, intermediate and low RSs. Attendees were recorded explaining RSs with patient simulators pre and post workshop. Researchers, blinded to time point, analysed recordings using a study-specific scoring system. Primary objective outcomes were improvements post workshop in HCPs' competence and confidence when communicating 17 pre-specified key information areas. We estimated odds ratios (OR) using conditional logistic regression to compare pre- and post-workshop scores. Results: 65 HCPs attended. Objective analyses revealed significant positive shifts post workshop which included explaining GEP tests (OR 2.98; 95% CI 1.38–6.42; P =.001), recurrence RSs (OR 3.99; 95% CI 1.72–9.25; P <.001), benefits of chemotherapy (OR 3.99; 95% CI 1.82–8.75; P <.001; and harms OR 2.31; 95% CI 1.37–3.92; P <.001) using jargon free language (OR 5.29; 95% CI 2.27–12.35; P <.001). Patient simulator assessments also showed significant improvements as did HCPs' self-assessments and ratings of their self-confidence when discussing different GEP tests with diverse patient types (P <.001). Conclusion: These short, intensive, interactive TARGET workshops significantly improved HCPs' communication about GEP results in ways likely to promote more informed decision-making by patients about chemotherapy. [ABSTRACT FROM AUTHOR]

Purpose: The use of novel and often expensive drugs offering limited survival benefit in advanced disease is controversial. Treatment recommendations are influenced by patient characteristics and trial data showing overall response rates (ORR), progression-free survival (PFS) and overall survival (OS). PFS is frequently the primary outcome in licencing studies.Patients and Methods: As part of a longitudinal study Assessing the 'VALue' to patients of PROgression Free Survival (AVALPROFS), oncologists completed checklists at baseline following consultations with patients. Questions probed perceived clinical benefits of the drugs to populations in general. Patients completed study-specific interview schedules at baseline, 6 weeks into treatment, and at withdrawal due to toxicity or progression. Patients also completed tumour- and treatment-specific quality of life questionnaires monthly for their time in the study. Only baseline results are reported here.Results: Thirty-two UK oncologists discussed management options with 90 patients with heterogeneous advanced cancers. Oncologists' estimates of medical benefit in general from treatment varied between 10 and 80 %. They expected 46/90 (51 %) of their patients to derive some clinical benefit from the prescribed treatment but were either unsure or expected none for 44/90 (49 %). Predictions of life expectancy were variable but 62 % (56/90) of patients were expected to survive longer with treatment. A majority of patients 51/90 (57 %) had 'no idea' or were 'unclear' what PFS meant and 45/90 (50 %) thought extension of life was the primary therapeutic aim of treatment.Conclusion: Discussions between doctors and patients with metastatic disease about future management plans and likely therapeutic gains are challenging. Factors influencing decisions about putative benefits of novel drugs are often applied inconsistently can be overly optimistic and may even contradict published data. [ABSTRACT FROM AUTHOR]

Purpose: Trials of novel drugs used in advanced disease often show only progression-free survival or modest overall survival benefits. Hypothetical studies suggest that stabilisation of metastatic disease and/or symptom burden are worth treatment-related side effects. We examined this premise contemporaneously using qualitative and quantitative methods.Methods: Patients with metastatic cancers expected to live > 6 months and prescribed drugs aimed at cancer control were interviewed: at baseline, at 6 weeks, at progression, and if treatment was stopped for toxicity. They also completed Functional Assessment of Cancer Therapy (FACT-G) plus Anti-Angiogenesis (AA) subscale questionnaires at baseline then monthly for 6 months.Results: Ninety out of 120 (75%) eligible patients participated: 41 (45%) remained on study for 6 months, 36 progressed or died, 4 had treatment breaks, and 9 withdrew due to toxicity. By 6 weeks, 66/69 (96%) patients were experiencing side effects which impacted their activities. Low QoL scores at baseline did not predict a higher risk of death or dropout. At 6-week interviews, as the side effect severity increased, patients were significantly less inclined to view the benefit of cancer control as worthwhile (X2 = 50.7, P < 0.001). Emotional well-being initially improved from baseline by 10 weeks, then gradually returned to baseline levels.Conclusion: Maintaining QoL is vital to most patients with advanced cancer so minimising treatment-related side effects is essential. As side effect severity increased, drugs that controlled cancer for short periods were not viewed as worthwhile. Patients need to have the therapeutic aims of further anti-cancer treatment explained honestly and sensitively. [ABSTRACT FROM AUTHOR]

The majority of men treated for prostate cancer will eventually develop castrate-resistant disease (CRPC) with metastases (mCRPC). There are several options for further treatment: chemotherapy, third-line hormone therapy, radium, immunotherapy, and palliation. Current ASCO guidelines for survivors of prostate cancer recommend that an individual's information needs at all stages of disease are assessed and that patients are provided with or referred to the appropriate sources for information and support. Earlier reviews have highlighted the dearth of such services and we wished to see if the situation had improved more recently. Unfortunately, we conclude that there is still a lack of good-quality congruent information easily accessible specifically for men with mCRPC and insufficient data regarding the risks, harms, and benefits of different management plans. More research providing a clear evidence base about treatment consequences using patient reported outcome measures is required. [ABSTRACT FROM AUTHOR]

Neoadjuvant endocrine therapy is an alternative to chemotherapy for women with oestrogen receptor (ER)-positive early breast cancer (BC). We aimed to assess feasibility of recruiting patients to a study comparing chemotherapy versus endocrine therapy in postmenopausal women with ER-rich primary BC, and response as well as translational endpoints were assessed. Patients requiring neoadjuvant therapy were randomised to chemotherapy: 6 × 3-weekly cycles FEC or endocrine therapy: letrozole 2.5 mg, daily for 18-23 weeks. Primary endpoints were recruitment feasibility and tissue collection. Secondary endpoints included clinical, radiological and pathological response rates, quality of life and translational endpoints. 63/80 patients approached were eligible, of those 44 (70, 95 % CI 57-81) were randomised. 12 (54.5, 95 % CI 32.2-75.6) chemotherapy patients showed radiological objective response compared with 13 (59.1, 95 % CI 36.4-79.3) letrozole patients. Compared with baseline, mean Ki-67 levels fell in both groups at days 2-4 and at surgery [fold change: 0.24 (95 % CI 0.12-0.51) and 0.24; (95 % CI 0.15-0.37), respectively]. Plasma total cfDNA levels rose from baseline to week 8 [fold change: chemotherapy 2.10 (95 % CI 1.47-3.00), letrozole 1.47(95 % CI 0.98-2.20)], and were maintained at surgery in the chemotherapy group [chemotherapy 2.63; 95 % CI 1.56-4.41), letrozole 0.95 (95 % CI 0.71-1.26)]. An increase in plasma let-7a miRNA was seen at surgery for patients with objective radiological response to chemotherapy. Recruitment and tissue collection endpoints were met; however, a larger trial was deemed unfeasible due to slow accrual. Both regimens were equally efficacious. Dynamic changes were seen in Ki-67 and circulating biomarkers in both groups with increases in cfDNA and let-7a miRNA persisting until surgery for chemotherapy patients. [ABSTRACT FROM AUTHOR]

Background: Most patients presenting with advanced ovarian cancer (AOC) eventually relapse. Symptom palliation, maintenance of quality of life (QoL) and prolongation of life are primary therapeutic goals.Methods: Sixty-six U.K. oncologists completed an online survey about AOC management. Two hundred and two patients were interviewed about care, treatment experiences and expectations.Results: Prior to diagnosis, 34% (69 out of 202) of women had > or =3 symptoms associated with AOC. Twenty-one per cent (43 out of 202) thought poor symptom recognition by general practitioners (GPs) delayed diagnosis. Amelioration of side effects experienced was variable, for example, only 54% (68 out of 127) distressed by alopecia had received sufficient information about it. Clinicians were asked 'What minimum gain in progression-free survival (PFS) would make you feel it worthwhile to offer maintenance therapy?'; 48% (24 out of 50) indicated 5-6 months, but 52% (26 out of 50) believed patients would find PFS of 3-4 months acceptable. When patients were presented with hypothetical scenarios, 33% (52 out of 160) would require 1-2 months extra life, 6% (10 out of 160) 3-4 months, 31% (49 out of 160) 5-6 months, and 31% (49 out of 160) > or =7 months. However, 86% (173 out of 202) would accept treatment that improved QoL without prolongation of life. When asked what was most important, 33% (67 out of 201) said QoL, 9% (19 out of 201) length of life and 57% (115 out of 201) said both were equally important.Conclusion: Clinicians' and patients' experiences, expectations and priorities about OC management may differ. [ABSTRACT FROM AUTHOR]

Background:Recruitment of patients into randomised clinical trials (RCTs) is essential for treatment evaluation. Appreciation of the barriers and drivers towards participation is important for trial design, communication and information provision.Method:As part of an intervention to facilitate effective multidisciplinary team communication about RCTs, cancer patients completed two study-specific questionnaires following trial discussions. One questionnaire examined reasons why patients accepted or declined trial entry, the other perceptions about their health-care professionals' (HCPs) information giving.Results:Questionnaires were completed by 74% (358/486) of patients approached; of these 81% (291/358) had joined an RCT, 16% (56/358) had declined and 3% (11/358) were undecided. Trial participation status of the 128 patients not returning questionnaires is unknown. Trial acceptance was not dependent on disease stage, tumour type, sex or age. Satisfaction with trial information and HCPs' communication was generally very good, irrespective of participation decisions. The primary reason given for trial acceptance was altruism (40%; 110/275), and for declining, trust in the doctor (28%; 12/43). Decliners preferred doctors to choose their treatment rather than be randomised (54% vs 39%; P<0.027). Acceptors were more likely to perceive doctors as wanting them to join trials (54% vs 30%; P<0.001). Trial type, that is, standard treatment vs novel or different durations of treatment, also influenced acceptance rates.Conclusion:The drivers and barriers to trial participation are partly related to trial design. Unease about randomisation and impact of duration on treatment efficacy are barriers for some. Altruism and HCPs' perceived attitudes are powerful influencing factors. [ABSTRACT FROM AUTHOR]

Background:The Intergroup Exemestane Study (IES) (ISRCTN11883920) demonstrated improved survival for postmenopausal women with ER-positive/unknown primary breast cancer who switched to exemestane after 2-3 years tamoxifen, compared with those continuing on tamoxifen to complete 5 years therapy. This was achieved without detriment to on-treatment quality-of-life (QoL). We report on- and post-treatment QoL impact in IES.Methods:A total of 582 patients from 8 countries participated in the QoL substudy. Functional Assessment of Cancer Therapy-Breast (FACT-B) and endocrine symptom subscale (ES) were completed at baseline, 3, 6, 9, 12, 18, 24, 30, 36, 48 and 60 months. The primary endpoint was FACT-B Trial Outcome Index (TOI); secondary endpoints included severity of individual endocrine symptoms.Results:Both the groups showed gradual improvement in overall QoL and lessening of total endocrine symptoms post treatment compared with baseline (P<0.002). There was no evidence of any between-group differences in TOI. Vasomotor complaints remained high on treatment. Vaginal discharge was more frequent (P<0.01) with tamoxifen up to 24 months from baseline. In both the groups, post-treatment libido did not recover to baseline levels.Conclusion:Clinical benefits of switching to exemestane are accompanied by good overall QoL. Although some symptoms persist, the majority of endocrine symptoms improve after treatment completion. [ABSTRACT FROM AUTHOR]

Background: The ACTION trial was initiated to provide evidence from a randomised trial on the effects of chemotherapy in women aged over 70 years where evidence for risk and benefit are lacking.Methods: This was a randomised, phase III clinical trial for high risk, oestrogen receptor (ER) negative/ER weakly positive early breast cancer. The trial planned to recruit 1000 women aged 70 years and older, randomised to receive 4 cycles of anthracycline chemotherapy or observation. The primary endpoint was relapse-free interval. The trial included a pilot phase to assess the acceptability and feasibility of recruitment.Results: The trial opened at 43 UK centres. Information on number of patients approached was available from 38 centres. Of the 43 eligible patients that were approached, 39 were not randomised due to patients declining entry. After 10 months only 4 patients had been randomised and after discussion with the research funder, the trial was closed and funding terminated.Conclusion: Despite widespread support at several public meetings, input from patient groups including representation on the Trial Management Group, the trial failed to recruit due to the inability to convince patients to accept randomisation. It would therefore seem that randomising the patients to receive chemotherapy vs observation is not a viable design in the current era for this patient population. [ABSTRACT FROM AUTHOR]

One third of all breast cancers are diagnosed in women aged 70 or over. Older women are a heterogeneous population who are under-represented in clinical trials, and as a result uncertainty can exist as to what represents optimal treatment. This minireview, from an international authorship, summarises the existing evidence surrounding the management of early breast cancer in women aged 70 and over. The use of primary surgery and endocrine therapy, and adjuvant chemotherapy, radiotherapy, endocrine therapy and trastuzumab are discussed. Reference is made to ongoing clinical trials in this area and areas of controversy are highlighted. [ABSTRACT FROM AUTHOR]

Background: Patient accrual into cancer clinical trials remains at low levels. This survey elicited attitudes and practices of cancer clinicians towards clinical trials.Method: The 43-item Clinicians Attitudes to Clinical Trials Questionnaire was completed by participants in an intervention study aimed at improving multi-disciplinary involvement in randomised trials. Responses from 13 items were summed to form a research-orientation score.Results: Eighty-seven clinicians (78%) returned questionnaires. Physicians, more often than surgeons, chose to prioritise prolonging a patient's life, recruited ≥50% of patients into trials and attended more research-focussed conferences. Clinicians at specialist centres were more positive about trials with no-treatment arms than those at district general hospitals, more likely to believe clinician, rather than patient reluctance to participate was the greater obstacle to trial accrual, and preferred national and international to local recognition. Clinicians belonging to breast and colorectal teams were less disappointed about not enrolling patients in trials and more accepting of no-treatment arm trials. Research orientation was higher in physicians than surgeons and higher in specialist centres than district hospitals.Conclusions: This study provides greater understanding of clinicians' attitudes to trials. Results have been used to inform training interventions for clinicians targeting the problem of low and selective accrual. [ABSTRACT FROM AUTHOR]

Background: barriers to randomised clinical trial (RCT) recruitment include failure to identify eligible patients, reluctance of staff to approach them and attitudes of some health-care professionals and patients. As part of a larger UK prospective study examining the communication and involvement in RCTs of 22 multidisciplinary teams in Wales, we also assessed the attitudes of patients they treat towards trials.Methods: out of 1146 patients attending outpatient departments who were approached, 1146 (93%) completed the seven-item Attitudes to Randomised Trials Questionnaire (ARTQ), probing their general attitudes towards medical research and likely participation in a hypothetical two-arm RCT.Results: randomisation initially deterred many patients from endorsing a willingness to participate. However, if information about the trial logic, voluntary nature and rights to withdraw were provided, together with further treatment details, 83% (886 out of 1066) would potentially participate. Other variables associated with a positive inclination towards participation included previous trial experience (P<0.01), male gender (P<0.01) and younger age, with patients > or =70 years less likely to consider trial entry (P<0.01).Conclusion: the majority of patients were receptive to RCT participation. Many of those initially disinclined because of randomisation would consider joining if given further details that form part of standard GCP consent guidelines. These data show the importance and need for clear communication and information to encourage RCT participation. Evidence-based training courses are available to assist with this. [ABSTRACT FROM AUTHOR]

Background: Women's awareness of ovarian cancer (OC) risks, their attitudes towards and beliefs about screening, together with misunderstandings or gaps in knowledge, may influence screening uptake.Methods: In total, 21 715 post-menopausal women completed questionnaires before randomisation into the UK Collaborative Trial of Ovarian Cancer Screening.Results: In all, 42.3% correctly identified their lifetime risk of OC; 87.1% knew that a family history of OC increased risk, but only 26.7% appreciated the association with a family history of breast cancer. Although 38.2% acknowledged increased risk post-menopause, only 8.8% were aware that OC diagnoses are highest in women over 65 years. Few (13.7%) recognised the association between pregnancy and reduced OC risk or protective effects of breastfeeding (6.2%). There were common misconceptions; 37.2% thought that an abnormal cervical smear and 26.4% that oral contraception increased the likelihood of OC. Although 84.4% recognised that most ovarian masses are benign, 20.2% thought having had a benign cyst increased OC risk. Most (99.4%) believed that a high uptake of OC screening would reduce mortality and (96.2%) that screen-detected cancers would have an improved prognosis.Conclusions: The results show a need for improved public understanding about OC risks and provide important information for GPs and health educationalists about initiatives needed for future awareness, prevention and screening programmes. [ABSTRACT FROM AUTHOR]

A diagnosis of breast cancer, whether the disease is early or advanced, can be devastating. With this in mind, constructive patient–physician relationships are essential to minimizing disease-related stress and anxiety, as patients undergo treatment and learn to cope with their diagnosis. Good communication skills are vital, and achieve measurable benefits, yet doctors receive very little training in communication. Patients may find it difficult to process large amounts of information, may not understand medical terminology, and can become confused or scared during discussions. They may need time to absorb information, and discuss it with friends and family, before treatment decisions are made. Patient awareness of treatment options is greater than ever, largely because of media exposure and the internet. Consequently, patients’ expectations and desire to be involved in treatment choice are increasing, although some patients still prefer to leave decision-making to their doctor. Information about potential side-effects and other treatment burdens is vital, if patients are to make truly informed choices. Knowing in advance what side effects may be encountered, and how to manage them, can also help to improve adherence to treatment, which is necessary for patients to gain the maximum benefit. Side effects that patients find most problematic often differ from those that most concern doctors. Individual patients have different needs and expectations that must be respected, but ensuring that they understand their diagnosis, and the expected benefits and potential risks of treatment, is the key to establishing a good therapeutic relationship and providing the best possible care. [ABSTRACT FROM AUTHOR]

Results from the completed treatment analysis of the ATAC (Arimidex, Tamoxifen alone or in combination) trial indicated that anastrozole was significantly superior to tamoxifen in terms of efficacy and safety in the adjuvant treatment of postmenopausal women with hormone receptor-positive (HR+) early breast cancer. On the basis of these results, this study estimated the cost-effectiveness of anastrozole vs tamoxifen, from the perspective of the UK National Health Service (NHS). A Markov model was developed using the 5-year completed treatment analysis from the ATAC trial (ISRCTN18233230), as well as data obtained from published literature and expert opinion. Resource utilisation data and associated costs (2003–4 UK£) were compiled from standard sources and expert opinion. Utility scores for a number of health states were obtained from a cross-sectional study of 26 representative patients using the standard gamble technique. The utility scores were then inserted into the model to obtain cost per quality adjusted life-year (QALY) gained. Costs and benefits were discounted at recommended annual rates of the UK Treasury (3.5%). Modelled for 25 years, anastrozole, relative to generic tamoxifen, was estimated to result in 0.244 QALYs gained per patient at an additional cost of £4315 per patient). The estimated incremental cost-effectiveness of anastrozole compared with tamoxifen was £17 656 per QALY gained. There was a greater than 90% probability that the cost-effectiveness of anastrozole was below £30 000 per QALY gained and of the order of 65% that it was below £20 000 per QALY gained. The results were robust to all parameters tested in sensitivity analysis. Compared with commonly accepted thresholds, anastrozole is a cost-effective alternative to generic tamoxifen in adjuvant treatment of postmenopausal women with HR+ early breast cancer from the UK NHS perspective.British Journal of Cancer (2007) 97, 152–161. doi:10.1038/sj.bjc.6603804 www.bjcancer.com Published online 10 July 2007 [ABSTRACT FROM AUTHOR]

Adjuvant endocrine therapy improves recurrence and survival rates, but has side effects and is inconvenient. The aim of this study was to determine the preferences of premenopausal women who had adjuvant endocrine therapy in a randomised trial. In all, 85 (or eighty-five) women completed semistructured interviews 6-30 months after finishing adjuvant endocrine therapy. Hypothetical scenarios based on known potential survival times (5 or 15 years) and rates (60% or 80% at 5 years) without adjuvant endocrine therapy were used to determine the smallest gains women judged necessary to make their adjuvant endocrine therapy worthwhile. Although a third of the women considered gains of 1% in survival rates or 6 months in survival times sufficient to make their adjuvant endocrine therapy worthwhile, more than half the women required gains of at least 5% in survival rates or 3 years in survival time as necessary to make adjuvant endocrine therapy worthwhile. Larger benefits were required by women who had longer treatment, worse side effects, and by those who were treated with goserelin alone. The route of administration (tablet vs injection) did not affect preferences and some women judged small benefits sufficient to make their adjuvant endocrine therapy worthwhile, but many women required larger benefits than their counterparts in similar studies of preferences for adjuvant chemotherapy. [ABSTRACT FROM AUTHOR]

We report here the different roles undertaken by the members of 10 multidisciplinary cancer teams in conveying information to patients during their care. Team members completed an Informational Roles Questionnaire measuring an individual's perception of their major role and that of their colleagues in giving information to patients. They also completed two standard psychological health measures, the General Health Questionnaire and Maslach Burnout Inventory. The information giving roles of the surgeon, oncologist, radiologist and clinical nurse specialist were well recognised by their colleagues; however, other team members' roles were more ambiguous and less well understood. The clinical nurse specialist provided the broadest information coverage for patients. Few professional groups regularly informed patients about clinical trials and family history and the clinical nurse specialist was often the only person to deal with patients' sexual well being, consequently these areas are likely to receive poor coverage. Probable psychiatric morbidity (GHQ> or =4) in teams ranged from 5 to 27%. High levels of emotional exhaustion were particularly apparent in team leaders and nurses and feelings of low levels of personal accomplishment were prevalent in the histopathologists and radiologists. Putative benefits to patients and healthcare professionals from multidisciplinary team working may not be realised without investment in team training. [ABSTRACT FROM AUTHOR]

A total of 82 Asian and 117 randomly selected white Caucasian patients at the Leicestershire Cancer Centre were assessed using measures of coping and adaption to cancer. On the Mental Adjustment to Cancer (MAC) scale, Asian patients were more fatalistic (P < 0.0001) and had more significant hopeless/helpless scores (P = 0.007). The two ethnic groups answered the three questions thought to assess denial differently. Caucasians were more likely not to dwell on their illness (73 vs 55.5%, P < 0.0001) and agree with the statement 'I have difficulty believing this is happening to me' (73 vs 60.5%, P < 0.0001). However, Asian patients were more likely to agree with the statement 'I don't really believe I have cancer' (48.2 vs 31.3%, P = 0.019). Within both groups there was an association with denial and anxious preoccupation (P < 0.001). On the Hospital Anxiety and Depression (HAD) scale, there was no difference in anxiety scores between either sexes or between the Asian and Caucasian groups. However, Asian patients were more depressed (P = 0.001). Although denial was significantly related to the presence of both depression (P < 0.0001) and anxiety (P = 0.001) in the entire patient population, there were different predictors of denial in each subgroup. On multiple regression analysis depression was linked with denial in Caucasians, whereas Fighting Spirit (minus helplessness/hopelessness) was linked with denial in Asian patients. There are definite differences in coping styles in British cancer patients according to ethnicity. While significant numbers in both groups employ denial in some form, Caucasian patients appear to adapt to the psychological pressures of cancer more successfully than Asian patients at a particular point in time. Further work is required to elucidate longitudinal relationships between denial and adaption to cancer. [ABSTRACT FROM AUTHOR]

A total of 600 patients from cancer centres throughout the UK identified their most preferred and most disliked descriptions of randomisation found in current patient information sheets and websites. The CancerBACUP description, which describes both the process of randomisation and why it is done, was most preferred 151 out of 533 (28%) patients. The NCI description was viewed as overly technical and most disliked 185 out of 483 (38%) patients. [ABSTRACT FROM AUTHOR]

A postal questionnaire was sent to affluent and deprived women with breast cancer in order to compare psychosocial aspects of care with the purpose of understanding the balance of care and explaining why deprived women have poorer outcomes. Data were collected regarding reported sources of information, SF-36 scores and ongoing causes of anxiety. The results demonstrate that affluent women were more likely to have received information from their hospital specialist (94.8 vs 76.0%) and from a breast care nurse (70.1 vs 40.0%) than deprived women. They were also more likely to have received information from magazines (50.6 vs 33.0%), newspapers (45.5 vs 22.0%) and television news (45.5 vs 26.0%). Deprived women had poorer SF-36 scores than affluent women, and reported greater anxiety about money (12.2 vs 2.8%), other health problems (22.1 vs 8.2%) and family problems (17.5 vs 6.9%). Personal and professional support is clearly important for patients with breast cancer. Health professionals need to be aware of the greater psychological distress demonstrated by deprived women, even some years after diagnosis with breast cancer, and seek to address it. [ABSTRACT FROM AUTHOR]

The efficacy of a communication skills training programme was shown through a randomised trial. Oncologists (N=160) from 34 cancer centres were allocated to written feedback plus course; course alone; written feedback alone or control. Each clinician had 6 - 10 interviews with patients videotaped at baseline and 3 months postintervention. Analysis of videotapes revealed improvements in the communication skills of clinicians randomised to training (n=80) compared with others (n=80). A 12-month follow-up assessment is reported here. Robust Poisson conditional analyses of counts of changes in communication behaviours revealed no demonstrable attrition in those who had shown improvement previously, including fewer leading questions, appropriate use of focused and open-ended questions and responses to patient cues. Additional skills, not apparent at 3 months, were now evident; the estimated effect sizes corresponded to 81% fewer interruptions (P=0.001) and increased summarising of information to 38% (P=0.038). However, expressions of empathy (54%, P=0.001) declined. The overall results show that 12 - 15 months postintervention, clinicians had integrated key communication skills into clinical practice and were applying others. This is the first RCT to show an enduring effect of communication skills training with transfer into the clinic. [ABSTRACT FROM AUTHOR]

Gynaecological cancer has been shown to affect women's sexual functioning, yet evidence suggests that healthcare professionals rarely discuss sexual issues with women diagnosed with a gynaecological cancer. Few studies have investigated why there is a lack of communication between healthcare professionals and women about sexual issues. Our study investigated the attitudes and behaviours of the 27 doctors and 16 nurses treating women with ovarian cancer in our centre towards the discussion of sexual issues, and also investigated women's experiences of such communication. Our findings showed that although most healthcare professionals thought that the majority of women with ovarian cancer would experience a sexual problem, only a quarter of doctors and a fifth of nurses actually discussed sexual issues with the women. Reasons for not discussing sexual issues included 'it is not my responsibility', 'embarrassment', 'lack of knowledge and experience' and 'lack of resources to provide support if needed'. While some of these reasons were also viewed as barriers by the women, the results demonstrate that there is a need from the women's perspective to improve communication about sexual issues, although the most appropriate approach to this remains to be investigated. [ABSTRACT FROM AUTHOR]

Cancer-related anaemia is associated with a wide spectrum of symptoms that can negatively affect quality of life. Because epoetin alfa has demonstrated efficacy in correcting cancer-related anaemia, the impact of this treatment on quality of life was evaluated in a multinational, randomised, double-blind, placebo-controlled trial in 375 anaemic cancer patients receiving non-platinum-based chemotherapy. The cancer-specific measures of quality of life included the general scale (FACT-G Total) and fatigue subscale (FACT-An Fatigue subscale) of the Functional Assessment of Cancer Therapy-Anaemia and the Cancer Linear Analogue Scales measuring energy, ability to do daily activities, and overall quality of life. These measures were also used to examine the relationship between haemoglobin levels and quality of life. Both univariate and multiple linear regression analyses of quality of life data were performed. Results of the univariate analysis have been reported previously. The a priori-planned multiple linear regression analysis, which accounted for the effects of disease progression and several other possibly confounding variables on quality of life, showed a significant advantage for epoetin alfa over placebo for the five scales (all, P<0.05), and confirmed the results of the univariate analysis. For cancer-specific measures, significant correlations were demonstrated between baseline haemoglobin and quality of life (r, range: 0.14-0.26, all P<0.05) and between change in haemoglobin and change in quality of life (r, range: 0.26-0.34, all P<0.01). These findings provide evidence that increasing haemoglobin levels by epoetin alfa administration can significantly improve cancer patients' quality of life. [ABSTRACT FROM AUTHOR]

Explaining the concept of randomisation in simple terms to patients during the discussion of randomised clinical trials can be a difficult task for many health care professionals. We report the results of a questionnaire-based survey, using seven descriptions of randomisation taken from Corbett's study. We examined the preferences of the general public and patients towards the descriptions and compared the results with the clinicians' choice. Participants in the survey were 341 lay people without cancer, 200 patients with cancer and 200 oncologists from cancer centres throughout the UK. It was difficult to identify 'the best' way to describe the process of randomisation. The two most favoured statements for patients and members of the public included a very explicit statement that mentioned 'a computer', 'chance' and 'not the doctor's or patient's decision' and a succinct statement that played down the role of 'chance'. Clinicians chose neither of these statements as closely resembling their own practice. Patients and members of the public most disliked the statement 'a computer will perform the equivalent of tossing a coin to allocate you to one of two methods of treatment'. This analogy used by 26% of oncologists, was viewed as trivialising and upsetting in the context of determining treatment for life threatening disease. [ABSTRACT FROM AUTHOR]

Psychiatric morbidity in patients with cancer is high and without appropriate treatment unremitting. We assessed the ability of 143 doctors to establish the psychological status of 2297 patients during outpatient consultations in 34 cancer centres and hospitals in the UK. Prior to seeing the doctor, consenting patients completed a short self-report questionnaire (GHQ12), designed for the psychological screening of large populations. At the end of the consultation, doctors completed visual analogue scales rating patients' distress. 837/2297 (36.4%) patients had GHQ scores suggestive of psychiatric morbidity. The doctors' sensitivity (true positive rate) was 28.87% (SD 25.29), specificity (true negative rate) 84.79% (SD 17.44). The misclassification rate was 34.7% (SD 13.79) meaning that for 797 patients the wrong assessment was probably made. These data show that much of the probable psychiatric morbidity experienced by patients with cancer goes unrecognized and therefore untreated. Doctors need communication skills training to elicit problems during consultations. Appropriate referrals to psychological services are necessary when patients requiring help are identified and ought to be an integral part of cancer care. [ABSTRACT FROM AUTHOR]

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2,P < 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1,P < 0.02) and what were all the possible treatments (chi square = 8.26, df = 1,P < 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable. [ABSTRACT FROM AUTHOR]

This paper reports on the reasons why patients agreed to or declined entry into randomized trials of cancer following discussions conducted by clinicians in both District General and University Hospitals. Two hundred and four patients completed a 16-item questionnaire following the consultation, of these 112 (55%) were women with breast cancer. Overall results showed that 147 (72.1%) patients accepted entry to a randomized clinical trial (RCT). The main reasons nominated for participating in a trial were that 'others will benefit' (23.1%) and 'trust in the doctor' (21.1%). One of the main reasons for declining trial entry was that patients were 'worried about randomization' (19.6%). There was a significantly higher acceptance rate for trials providing active treatment in every arm 98 (80.6%) compared with those trials with a no treatment arm 46 (60.5%), χ[SUP2] test P = 0.003. The study outlines a number of factors that appear to influence a patient's decision to accept or decline entry into an RCT of cancer therapy. An important factor is whether or not the trial offers active treatment in all arms of the study. Communication that promotes trust and confidence in the doctor is also a powerful motivating influence. [ABSTRACT FROM AUTHOR]

Presents information on the delivery of bad news to patients with gastroenterological problems. Effects of giving bad news ineptly; Importance of the timing of information giving; Reason behind the dissatisfaction of patients with the information given to them by physicians.

Sexual activity is an important dimension of quality of life. Therefore it is important to assess the impact that any treatment may have on sexual functioning so that patients can be warned of possible side effects and interventions offered to help ameliorate these. The Sexual Activity Questionnaire (SAQ) was developed to investigate the impact of long-term tamoxifen on the sexual functioning of women at high risk of developing breast cancer. It was also tested on a sample of women with no such risk. The majority of variance in sexual functioning can be explained by three factors: pleasure from sexual intercourse, discomfort during sexual intercourse and habit. We found that the frequency of sexual activity decreased steadily with age. Furthermore, pleasure dropped and discomfort increased in women aged over 55. We report psychometric data showing that the SAQ is a valid, reliable and acceptable measure for describing the sexual functioning of women in terms of activity, pleasure and discomfort. It is quick and easy to administer and has good face validity discriminating between the sexual functioning of pre- and post-menopausal women. [ABSTRACT FROM AUTHOR]