Impact of a cancer clinical trials web site on discussions about trial participation: a cluster randomized trial

Dear, Rachel; Barratt, Alexandra; Askie, Lisa; Butow, Phyllis; McGeechan, Kevin; Crossing, Sally; Currow, David C.; Tattersall, Martin H. N.

doi:10.1093/annonc/mdr585

Cited by 17 publications

(28 citation statements)

References 23 publications

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“…Thus, the illness type and stage of included patients appears particularly heterogeneous. Because of the aims and scope of the two primary studies from which the audio tapes were derived , the FM's relationship to the patient was able to be determined in only 59 out of the 72 consultations (Table ). Spouse/partners most often attended (wife 38%; husband 34%), followed by daughters (15%) then sisters (7%).…”

Section: Resultsmentioning

confidence: 99%

“…Transcripts of audiotaped initial medical or radiation oncology consultations collected for two previous studies reported elsewhere were analysed using KINcode. We selected transcripts of adult cancer patients (any age, gender, cancer type or stage) who were accompanied by an adult ‘FM’ (e.g.…”

Section: Methodsmentioning

confidence: 99%

“…Transcripts were excluded if we have as follows: (i) more than one FM or (ii) more than one oncologist was active throughout the consultation; or (iii) the decision centred on involvement in a clinical trial. A total of 72 consultation transcripts were included; 26 from the study of Butow et al and 46 from the study of Dear et al . The 72 consultations are clustered under 18 different oncologists, with an average of 4 consultations per oncologist (range 1–16) (Table ).…”

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family‐relevant behaviours (KINcode)

Laidsaar-Powell

Butow

et al. 2015

Psycho-Oncology

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This study provides novel insights into the complex nature of family involvement. The findings highlight potentially positive FM-focused consultation behaviours such as oncologist responsiveness to family questions and potential areas for improvement such as rapport building, invitation of questions and validation of the family's role. Family-specific communication skills training should be considered in medical student and professional education settings. Copyright © 2015 John Wiley & Sons, Ltd.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family‐relevant behaviours (KINcode)

Laidsaar-Powell

Butow

et al. 2015

Psycho-Oncology

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“…Decision aids may increase patients´ perception of the desease but it is not guaranteed that they lead to an increase of shared decision making [42]. Last but not least, the possibility of free online access to information about studies such as the ´Australian Cancer Trials´ [43] helps to optimise the information basis for patients, family members and physicians.…”

Section: Discussionmentioning

confidence: 99%

Interdisciplinary decision making in prostate cancer therapy – 5-years’ time trends at the Interdisciplinary Prostate Cancer Center (IPC) of the Charité Berlin

Baumunk

Reunkoff

Kushner

et al. 2013

BMC Med Inform Decis Mak

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BackgroundPatients with prostate cancer face the difficult decision between a wide range of therapeutic options. These men require elaborate information about their individual risk profile and the therapeutic strategies´ risks and benefits to choose the best possible option. In order to detect time trends and quality improvements between an early patient population (2003/2004) and a later reference group (2007/2008) data was analysed with regards to epidemiologic parameters, differences in diagnostics and the type and ranking of the recommended therapies taking into account changes to Gleason Grading System and implementation of new therapeutic strategies, particularly Active surveillance, in 2005.MethodsData from all 496 consecutive patients who received consultation in 2003/2004 (n = 280) and 2007/2008 (n = 216) was retrospectively evaluated. Categorical variables were compared using the Chi-square test. Dependent variables were analysed using the unpaired Students´ t-test and the Mann–Whitney U-test.ResultsThe cohorts were comparable concerning clinical stage, initial PSA, prostate volume, comorbidities and organ confined disease. Patients in Cohort I were younger (66.44 vs. 69.31y; p < .001) and had a longer life expectancy (17.22 vs. 14.75y; p < .001). 50.9%, 28.2% and 20.9% in Cohort I and 37.2%, 39.6% and 23.2% in Cohort II showed low-, intermediate- and high-risk disease (D´Amico) with a trend towards an increased risk profile in Cohort II (p = .066). The risk-adapted therapy recommended as first option was radical prostatectomy for 91.5% in Cohort I and 69.7% in Cohort II, radiation therapy for 83.7% in Cohort I and 50.7% in Cohort II, and other therapies (brachytherapy, Active surveillance, Watchful waiting, high-intensity focused ultrasound) for 6.5% in Cohort I and 6.9% in Cohort II (p < .001). Radiation therapy was predominant in both cohorts as second treatment option (p < .001). Time trends showing quality improvement involved an increase in biopsy cores (9.95 ± 2.38 vs. 8.43 ± 2.29; p < .001) and an increased recommendation for bilateral nerve sparing (p < .001).ConclusionIn the earlier years, younger patients with a more favourable risk profile presented for interdisciplinary consultation. A unilateral recommendation for radical prostatectomy and radiation therapy was predominant. In the later years, the patient population was considerably older. However, this group may have benefitted from optimised diagnostic possibilities and a wider range of treatment options.

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“…28 Furthermore, even in the absence of language barriers, explaining and understanding the concepts, including randomization, have been shown to pose a unique challenge in many instances. 30 For glioma patients, cognitive and behavioral changes may impact not only study eligibility but may also potentially impact the complex process of informed consent. 31 In a prospective study investigating longitudinal changes in decisional capacity, Marson et al demonstrated that patients with malignant gliomas had significant impairment of their capacity to consent to medical treatment and, most importantly, to consent to research participation.…”

Section: Recruitment Barriersmentioning

confidence: 99%

Culturally and linguistically diverse patient participation in glioma research

Lwin

Broom

Cosman

et al. 2014

Neuro-Oncology Practice

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Marginal communities, such as culturally and linguistically diverse (CALD) patients, have significantly lower rates of recruitment, accrual, and retention in cancer clinical trials. A combination of language and cultural barriers means that trial participation from CALD communities remains at suboptimal levels, which in turn favors research findings that are biased towards therapeutic effects or toxicities within the context of non-CALD populations. Here we outline some key challenges and implications for CALD patient participation in glioma research in countries such as Australia, where English is the language of governance and health services implementation. We highlight multistakeholder interventions to improve both investigator recruitment and participation of CALD communities in future glioma research, particularly in this era when global migration has come of age. Enhancing research participation of CALD communities ensures not only wider understanding of genetic heterogeneity to improve glioma outcomes but also equity in access to care.Keywords: culturally and linguistically diverse (CALD), glioma, research participation. Culturally and Linguistically Diverse Patient Participation in Glioma ResearchImproving patient participation in clinical research remains a priority across all fields of medicine. Research demonstrates that fewer than 5% of all adult cancer patients, on an international basis, enter clinical trials annually, and this rate has not improved in more than 2 decades.1,2 Within this context, marginal communities, such as culturally and linguistically diverse (CALD) patients, have significantly lower rates of recruitment, accrual, and retention in cancer clinical trials.3 Lower participation of CALD patients negatively impacts the interpretation, validity, and generalized applicability of next-generation trial results. Thus, enhancing CALD patient participation remains an important but underresearched issue.Over the past decade, neuro-oncology research has witnessed a steady shift towards personalized medicine with a clear focus on stratifying trials in an attempt to identify phenotypes and genotypes that might gain maximum benefit from emerging novel treatments. 4,5 Although there has been a stronger research emphasis on personalized care and tumor evolution, there has been limited emphasis on widening the diversity of trial participants from diverse populations such as CALD communities. Moreover, in contemporary glioma research, healthrelated quality of life (HRQoL) has emerged as a key endpoint. 6,7HRQoL research and measurement require not only sensitivity to the cultural traditions, beliefs, or practices of CALD communities, but HRQoL metrics may even need to be specific to CALD patient nuances across nonstandardized cultural divides. 8 A combination of language and cultural barriers means that trial participation from diverse CALD communities remains at suboptimal levels, which in turn favors research findings that are biased towards the therapeutic effects within the context of non-CAL...

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Impact of a cancer clinical trials web site on discussions about trial participation: a cluster randomized trial

Abstract: Good communication between patients and physicians is essential. Within this context, a web site such as Australian Cancer Trials may be an important tool to encourage discussion about clinical trial participation.

Cited by 17 publications

References 23 publications

Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family‐relevant behaviours (KINcode)

Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family‐relevant behaviours (KINcode)

Interdisciplinary decision making in prostate cancer therapy – 5-years’ time trends at the Interdisciplinary Prostate Cancer Center (IPC) of the Charité Berlin

Culturally and linguistically diverse patient participation in glioma research

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