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

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

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

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

Psychosocial controversies in breast cancer

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Low grade Ductal Carcinoma in situ (DCIS): how best to describe it?

BACKGROUND: In the absence of definitive data about the natural history of DCIS the appropriateness of describing DCIS as cancer is controversial. METHODS: We conducted a survey amongst British Breast Group (BBG) members, to determine which descriptions of DCIS were deemed most accurate and appropriate. RESULTS: 54/73 (74%) attendees completed the survey: A majority (34/54; 63%) said they would be comfortable using the description that explained DCIS as abnormal cells in the milk ducts that had not spread into other breast tissue and which did not need urgent treatment as if it was breast cancer and this description was overall the most preferred (24/54; 44%). CONCLUSIONS: Little consensus exists regarding how best to explain low grade DCIS to patients

Interactions Between the Basolateral Amygdala and Ventral Striatum During Probabilistic Learning in Children and Associations with Individual Differences in Free Cortisol

Stress can drastically alter the behavioural and functional correlates of feedback learning; however, the functional correlates of these effects are poorly understood, particularly in children. In the present study, typically developing children between the ages of 9- and 11-years-old completed a probabilistic learning task with both appetitive and aversive outcomes in a magnetic resonance imaging scanner. Anticipatory stress to the experimental environment was measured via salivary cortisol at baseline and prior to completion of the task. Although baseline and pre-MRI cortisol values were not reliably different at the group level, subsequent analyses revealed that the basolateral amygdala was less responsive to positive feedback in children with higher pre-MRI cortisol levels. Furthermore, individual differences in feedback-related basolateral amygdala activity were positively associated with differences in striatal activity. Thus, the basolateral amygdala may be particularly sensitive to individual differences in active cortisol levels, and may also modulate striatal feedback sensitivity

Emerging synthetic drugs for the treatment of hepatic cirrhosis: a 2024 update

Cirrhosis is associated with a substantial, and increasing, health and socioeconomic burden worldwide. The leading causes of cirrhosis are steatotic liver diseases (including alcohol-related liver disease and metabolic dysfunction-associated steatohepatitis (MASH, formerly nonalcoholic steatohepatitis (NASH)) and chronic viral hepatitis. Owing to rising rates of alcohol consumption, an aging general population, and a spiralling prevalence of metabolic risk factors, a dramatic escalation in cirrhosis-related morbidity and mortality is predicted [1]. It currently ranks tenth among the leading causes of death in Africa (compared to thirteenth in 2015), ninth in Southeast Asia and Europe, and fifth in the Eastern Mediterranean [1]. Cirrhosis is associated with huge healthcare costs, with the bulk of this expenditure attributable to inpatient or emergency department care. Furthermore, cirrhosis causes wide-ranging socioeconomic effects including reduced employment and loss of productivity, and impaired health-related quality of life (HRQoL). In this editorial, we provide an update on our 2021 review of emerging synthetic drugs for cirrhosis [2], consider the setbacks and progress over the past three years, and provide some future insights.<br/

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