No abstract
Modern breast cancer treatment offers many women greater prospects of cure or lengthier, good quality survival than was possible in the past. Advances include improved diagnostic and staging procedures, sophisticated onco-plastic surgery, enhanced radiotherapy techniques, and targeted systemic therapies. Much more attention has also been paid to cancer care delivery and access to specialist nurses, counsellors, support groups, and services provided by breast cancer charities. However, there are some concerns that these considerable improvements in treatment delivery and clinical outcomes have not led to similar benefits in the psychosocial, functional, and sexual well-being of women. The impact that non-life threatening, long-term iatrogenic harms of otherwise efficacious anticancer treatments has on patients is often overlooked; this is in part because of the emphasis given to physician-reported safety data in trials and the general exclusion of patient-reported outcomes (PROs). A failure to utilise reliable PRO measures has meant that some problems are underreported, which consequently has hampered much-needed research into ameliorative interventions. Systematic monitoring of quality of life-threatening side effects would permit early implementation of effective interventions and enhance long-term survivorship. Some examples of the pervasive difficulties that continue to affect survivors and evidence that certain interventions might help are provided in this commentary.
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.
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