Participation of patients in decisions about treatment for cancer

The primary aim of treatment for cancer is to improve the quality of life of patients by curing them or producing a long and worthwhile remission and ameliorating their worst symptoms. For many types of cancers, however, the most appropriate management is not always clear or based on the best evidence from well conducted randomised controlled trials. Clinicians may have more than one therapeutic option to offer patients and there are many calls for more involvement of patients in decision making about their treatment. Two fundamental issues should be determined when discussing treatment choices with patients—their own preferences about the amount and type of information that is needed and their actual rather than perceived desire for participation in decision making. A clear distinction needs to be made between a desire for information and a wish to assume responsibility for decision making. They are not one and the same thing. In one study of women with breast cancer, improvements in quality of life brought about by reduced anxiety and depression and better adjustment were primarily related to satisfaction with information they got, not merely involvement with decision making about the type of surgery.1 Many studies have shown that patients want much more information than their doctors believe they do.2 We also know that the ability of doctors to predict which patients want an active, shared, or passive role in decision making is very poor in palliative care and when active, potentially curative treatment is discussed. 3 4 Patients' preferences about choice of treatment are poorly understood and usually based on intuitive assumptions about their perceived intelligence, age, or quality of life. This problem is not confined to the United Kingdom, although the poor ratio of oncologists to patients does mean that good patient centred communication about choices available and their consequences is easily omitted in busy clinics. We await with interest more results from the study to understand prognoses and preferences for outcomes and risks of treatments from the United States.5 The choices of treatment put before patients should involve an adequate and objective appraisal of information, delivered in a patient centred manner backed by information booklets, audio and video tapes, and references to good websites such as those provided by CancerBACUP, the new National electronic Library for Health (NeLH), and the DIPEx database.6-8 Unfortunately even when evidence concerning improved survival or disease free intervals exists, data on quality of life are either missing, sketchy, or not well integrated into the analysis of overall benefit. There is some evidence that doctors do not collect accurate information about symptoms that affect quality of life; consequently patients may be agreeing to different treatments without being aware of their side effects.9 Further, doctors admit to having difficulty integrating the results from formal assessment of quality of life by questionnaires into clinical management, preferring to rely on their own clinical impressions about tolerability or impact of side effects.10 Arguably in some situations, including adjuvant therapy and palliation, these quality of life parameters might be the most important areas of information that a patient requires about likely benefit before consenting to treatment. Patients cannot participate in decision making to their desired extent unless they have the right types of information, given in ways optimal for their own level of understanding. There is a compelling need for training and other interventions to help communication between doctors and patients about the likely and preferred therapeutic goals and priorities of treatment. True patient participation, which may include an expressed preference by the patient to assume a more passive role about the type of information they require, and involvement in decision making is, for most, an unachievable goal unless we see some real improvements in the current system of healthcare delivery. Too many patients are being seen by too few doctors in over burdened clinics with inadequate support staff for meeting adequately the individual information needs of patients with cancer

For the benefit of others: reasons why women with breast cancer participate in RCTs

Introduction: Appreciation of the barriers and drivers affecting enrolment in randomised clinical trials (RCTs) is important for future trial design, communication and information provision. Method: As part of an intervention to facilitate UK multidisciplinary team communication about RCTs, women with breast cancer who discussed trials with doctors and/or research nurses completed questionnaires examining: - clarity of trial information and reasons for either accepting or declining trial entry. Results: 152 women with breast cancer completed the questionnaires; 113/152 (74%) consented to RCT enrolment. Patients’ satisfaction with communication about the trial information was very good, irrespective of participation decisions. Acceptors’ and decliners’ responses to 9/16 statements concerning decisions about trial participation differed significantly. ‘Wanting to help with doctor’s research’ influenced 100% acceptors compared to 57% of decliners (p<.001). Decliners were more likely to be ‘worried about randomisation’ (20% v 39%; p<.035) and to ‘want doctor to choose treatment rather than be randomised’ (31% v 53%; p<.031). Primary reason for trial acceptance was altruism; “I feel that others with my illness will benefit from the results of the trial”, 58/108 (54%). Conclusion: A majority of women accepted RCT entry citing altruistic motivations as the primary driver for participation. Trial design and setting (metastatic or adjuvant) had little impact on participation

Psychosocial controversies in breast cancer

No description supplie

The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured interviews

OBJECTIVES: To investigate the psychosocial impact of bilateral prophylactic mastectomy for women with increased risk of breast cancer and to identify, preoperatively, risk factors for postoperative distress. DESIGN: Prospective study using interviews and questionnaire assessments. SETTING: Participants' homes throughout the United Kingdom. PARTICIPANTS: 143 women with increased risk of developing breast cancer who were offered bilateral prophylactic mastectomy and who accepted or declined the surgery; a further 11 were offered surgery but deferred making a decision. MAIN OUTCOME MEASURES: Psychological and sexual morbidity. RESULTS: Psychological morbidity decreased significantly over time for the 79 women who chose to have surgery (accepters): 58% (41/71) preoperatively v 41% (29/71) 6 months postoperatively (difference in percentages 17%, 95% confidence interval 2% to 32%; P=0.04) and 60% (39/65) preoperatively v 29% (19/65) 18 months postoperatively (31%, 15% to 47%; P<0.001). Psychological morbidity in the 64 women who declined surgery (decliners) did not decrease significantly: 57% (31/54) at baseline v 43% (23/54) at 6 months (14%, 0% to 29%; P=0.08) and 57% (29/52) at baseline v 41% (21/52) at 18 months (16%; -2% to 33%; P=0.11). Greater than normal proneness to anxiety was more common in the decliners than in the accepters: 78% (45/58) v 56% (41/73) (22%, 6% to 38%; P=0.006). Accepters were more likely than decliners to believe it inevitable that they would develop breast cancer (32% (24/74) v 10% (6/58) (difference in percentages 22%, 9% to 35%; P=0.003)), and decliners were more likely to believe that screening could help (92% (55/60) v 74% (55/74) (18%, 5% to 31%; P=0.007)). Level of sexual discomfort and degree of sexual pleasure did not change significantly over time in either of the two groups. CONCLUSIONS: Bilateral prophylactic mastectomy may provide psychological benefits in women with a high risk of developing breast cancer

Overtreatment of low-grade ductal carcinoma in situ

Importance: While the prevalence of ductal carcinoma in situ (DCIS) of the breast has increased substantially following the introduction of breast-screening methods, the clinical significance of early detection and treatment for DCIS remains unclear. Objective: To investigate the survival benefit of breast surgery for low-grade DCIS. Design, Setting, and Participants: A retrospective longitudinal cohort study using the Surveillance, Epidemiology, and End Results (SEER) database from October 9, 2014, to January 15, 2015, at the Dana-Farber/Brigham and Women’s Cancer Center. Between 1988 and 2011, 57 222 eligible cases of DCIS with known nuclear grade and surgery status were identified. Exposures: Patients were divided into surgery and nonsurgery groups. Main: Outcomes and Measures Propensity score weighting was used to balance patient backgrounds between groups. A log-rank test and multivariable Cox proportional hazards model was used to assess factors related to overall and breast cancer–specific survival. Results: Of 57 222 cases of DCIS identified in this study, 1169 cases (2.0%) were managed without surgery and 56 053 cases (98.0%) were managed with surgery. With a median follow-up of 72 months from diagnosis, there were 576 breast cancer–specific deaths (1.0%). The weighted 10-year breast cancer–specific survival was 93.4% for the nonsurgery group and 98.5% for the surgery group (log-rank test, P < .001). The degree of survival benefit among those managed surgically differed according to nuclear grade (P = .003). For low-grade DCIS, the weighted 10-year breast cancer–specific survival of the nonsurgery group was 98.8% and that of the surgery group was 98.6% (P = .95). Multivariable analysis showed there was no significant difference in the weighted hazard ratios of breast cancer–specific survival between the surgery and nonsurgery groups for low-grade DCIS. The weighted hazard ratios of intermediate- and high-grade DCIS were significantly different (low grade: hazard ratio, 0.85; 95% CI, 0.21-3.52; intermediate grade: hazard ratio, 0.23; 95% CI, 0.14-0.42; and high grade: hazard ratio, 0.15; 95% CI, 0.11-0.23) and similar results were seen for overall survival. Conclusions and Relevance: The survival benefit of performing breast surgery for low-grade DCIS was lower than that for intermediate- or high-grade DCIS. A prospective clinical trial is warranted to investigate the feasibility of active surveillance for the management of low-grade DCIS

Intentional and non-intentional non-adherence to medication amongst breast cancer patients

This study aimed to investigate the prevalence of and factors associated with non-adherence to medication amongst a sample of breast cancer patients. 131 women with stable disease were interviewed and completed standardised psychological measures. 55% of women reported non-adherence to medication frequently or occasionally, with younger women and those who disliked taking their medication being significantly less adherent (P = 0.015, P = 0.001). Women who deliberately omitted taking their tablets occasionally or frequently had significantly lower scores, indicative of a weaker influence, on 'internal' and 'powerful others' dimensions of health locus of control (P = 0.032, P = 0.009). Despite a life-threatening diagnosis, patients may not adhere to medication representing a potential missed opportunity for health gain and waste of resources. Furthermore, interpretation of clinical trial data may be misleading without adherence information. More research is needed to identify those at risk for non-adherence. If other routes of administration are available these options should be discussed with patients to maximise efficacy of therapy

Intravenous versus subcutaneous drug administration. Which do patients prefer? A systematic review

BACKGROUND: Intravenous (IV) drug delivery is commonly used for its rapid administration and immediate drug effect. Most studies compare IV to subcutaneous (SC) delivery in terms of safety and efficacy, but little is known about what patients prefer. METHODS: A systematic review was conducted by searching seven electronic databases for articles published up to February 2014. Included studies were randomized controlled trials (RCTs) and/or crossover designs investigating patient preference for SC versus IV administration. The risk of bias in the RCTs was determined using the Cochrane Collaboration tool. Reviewers independently extracted data and assessed the risk of bias. Any discrepancies were resolved by consensus. RESULTS: The search identified 115 publications, but few (6/115) met the inclusion criteria. Patient populations and drugs investigated were diverse. Four of six studies demonstrated a clear patient preference for SC administration. Main factors associated with SC preference were time saving and the ability to have treatment at home. Only three studies used study-specific instruments to measure preference. CONCLUSIONS: Results suggest that patients prefer SC over IV delivery. Patient preference has clearly been neglected in clinical research, but it is important in medical decision making when choosing treatment methods as it has implications for adherence and quality of life. If the safety and efficacy of both administration routes are equivalent, then the most important factor should be patient preference as this will ensure optimal treatment adherence and ultimately improve patient experience or satisfaction. Future drug efficacy and safety studies should include contemporaneous, actual patient preference where possible, utilizing appropriate measures

[Rapid response] Re: colorectal cancer: summary of NICE guidance

No description supplie

The pervasive nature of uncertainty – a qualitative study with patients with advanced cancer and their informal caregivers

Purpose: To explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews, transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: 24 patient-caregiver dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years), caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward however patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and 3 health care professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues