Throughout the world there are problems recruiting ethnic minority patients into cancer clinical trials. A major barrier to trial entry may be distrust of research and the medical system. This may be compounded by the regulatory framework governing research with an emphasis on written consent, closed questions and consent documentation, as well as fiscal issues. The Leicester UK experience is that trial accrual is better if British South Asian patients are approached by a senior doctor rather than someone of perceived lesser hierarchical status and a greater partnership between the hospital and General Practitioner may increase trial participation of this particular ethnic minority. In Los Angeles, USA, trial recruitment was improved by a greater utilisation of Hispanic staff and a Spanish language-based education programme. Involvement of community leaders is essential. While adhering to national, legal and ethnical standards, information sheets and consent, it helps if forms can be tailored towards the local ethnic minority population. Written translations are often of limited value in the recruitment of patients with no or limited knowledge of English. In some cultural settings, tape-recorded verbal consent (following approval presentations) may be an acceptable substitute for written consent, and appropriate legislative changes should be considered to facilitate this option. Approaches should be tailored to specific minority populations, taking consideration of their unique characteristics and with input from their community leadership.
BACKGROUND: There is considerable uncertainty regarding the acceptability of routine distress screening. METHODS: In an unfunded implementation study, the authors asked 50 clinicians (chemotherapy nurses and treatment radiographers/radiation technologists) to implement a screening program for distress as part of routine care and to record their feedback after each clinical encounter. In total, 379 patients were screened using a simple paper-and-pencil versions of distress thermometer and the emotion thermometer (ET). RESULTS: Across all screening applications, clinicians believed that screening was useful during 43% of assessments and was not useful during 35.9% of assessments, and they were unsure or neutral in 21.1% of assessments. The application of the screening program assisted staff in changing their clinical opinion after 41.9% of assessments, and clinicians believed that the screening program helped with communication in >50% of assessments. However, 37.5% believed that screening was impractical for routine use, and more chemotherapy nurses than radiographers rated the screening program as ''not useful.'' On multivariate analysis, 3 variables were associated with high staff satisfaction with screening, namely, receipt of prior training, talking with the patient about psychosocial issues, and improved detection of psychological problems. A favorable perception of screening also was linked to a change in clinical opinion. CONCLUSIONS: Opinions of cancer clinicians regarding routine distress screening were mixed: Approximately 33% considered screening not useful/impractical, whereas >50%n believed promoted good communication and/or helped with recognition. Clinicians who were more positive about screening gained greater benefits from screening in terms of communication and recognition. Cancer 2012;118:6260-9.
Background and Purpose-Report on the status of an on-going National Institutes of Neurological Disorders and Stroke (NINDS)-supported clinical trial of management of unbled brain arteriovenous malformations. Summary of Review-Begun in April 2007 with 3 centers, the trial has grown to 65 centers, and has randomized 124 patients through mid-June 2010 en route to the planned 400. The current literature continues to support the rationale for the trial. Conclusions-ARUBA is steadily approaching its monthly randomization goals and has already reached the number needed to test the maximum published interventional complication rates against the minimum hemorrhage rates for natural history. (Stroke. 2010;41:e537-e540.)
Background The Mesothelioma and Radical Surgery Trial (MARS 2) aims to evaluate a surgical procedure by comparing chemotherapy and surgery against chemotherapy alone. The pilot study for MARS 2 evaluated the viability of recruitment. Challenges have been reported in conducting clinical research into thoracic surgical treatments and evidence is required to improve our understanding of patient experiences of trial procedures, trial treatments and the factors that influence participation. Methods This longitudinal qualitative study was nested within the MARS 2 pilot. Semi-structured telephone interviews were conducted with 15 participants in the MARS 2 trial. Interviews were conducted post-randomisation, post-surgery (surgery arm) and at 6 and 12 months. Altogether, 41 interviews were carried out. The data were analysed using framework techniques. Results Challenges were identified regarding the volume and complexity of information given to participants, and their understanding of clinical equipoise and randomisation. Factors influencing participation included having an opportunity to undergo surgery, a self-assessment of their ability to cope with trial treatments, maintaining a positive approach and altruism. Obstacles included the logistics of traveling for treatment in an unfamiliar setting. Negative consequences of trial participation included increased uncertainty amplified by multiple care providers and unclear transition arrangements after the trial. Conclusions Participants’ descriptions provided insights that have implications for care for mesothelioma trial patients. The need for healthcare staff to be alert to the potential for misunderstanding, particularly when presenting treatment options, was identified. Patients perceived and derived benefits from taking part in the trial but experienced some negative consequences. These should be anticipated and managed proactively. Trial registration ClinicalTrials.gov, NCT02040272. Registered on 20 January 2014.
ObjectivesThis cross-sectional survey investigated whether there were ethnic differences in depressive symptoms among British South Asian (BSA) patients with cancer compared with British White (BW) patients during 9 months following presentation at a UK Cancer Centre. We examined associations between depressed mood, coping strategies and the burden of symptoms.DesignQuestionnaires were administered to 94 BSA and 185 BW recently diagnosed patients with cancer at baseline and at 3 and 9 months. In total, 53.8% of the BSA samples were born in the Indian subcontinent, 33% in Africa and 12.9% in the UK. Three screening tools for depression were used to counter concerns about ethnic bias and validity in linguistic translation. The Hospital Anxiety and Depression Scale (HADS-D), Patient Health Questionnaire-9 (both validated in Gujarati), Emotion Thermometers (including the Distress Thermometer (DT), Mini-MAC and the newly developed Cancer Insight and Denial questionnaire (CIDQ) were completed.SettingLeicestershire Cancer Centre, UK.Participants94 BSA and 185 BW recently diagnosed patients with cancer.ResultsBSA self-reported significantly higher rates of depressive symptoms compared with BW patients longitudinally (HADS-D ≥8: baseline: BSA 35.1% vs BW 16.8%, p=0.001; 3 months BSA 45.6% vs BW 20.8%, p=0.001; 9 months BSA 40.6% vs BW 15.3%, p=0.004). BSA patients used potentially maladaptive coping strategies more frequently than BW patients at baseline (hopelessness/helplessness p=0.005, fatalism p=0.0005, avoidance p=0.005; the CIDQ denial statement ‘I do not really believe I have cancer’ p=0.0005). BSA patients experienced more physical symptoms (DT checklist), which correlated with ethnic differences in depressive symptoms especially at 3 months.ConclusionsHealth professionals need to be aware of a greater probability of depressive symptomatology (including somatic symptoms) and how this may present clinically in the first 9 months after diagnosis if this ethnic disparity in mental well-being is to be addressed.
The number of patients on the ketogenic diet had increased since 2000. However, numbers remained low and the main reasons given were the lack of referrals and a lack of funding. Recommendations are made to improve the dietetic and funding resources available so that an efficacious treatment for intractable epilepsy of childhood can be made more widely available.
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