Aim This study explored the attitudes of patients with advanced cancer towards MTP and return of results, prior to undergoing genomic testing within a research program. Methods Participants were recruited as part of the longitudinal PiGeOn (Psychosocial Issues in Genomics in Oncology) study involving patients with advanced/metastatic solid cancer who had exhausted therapeutic options and who were offered MTP in order to identify cognate therapies. Twenty patients, selected by purposive sampling, were interviewed around the time they gave consent to MTP. Interviews were audio recorded, transcribed and analysed using thematic analysis. Themes identified in the transcripts were cross-validated via qualitative responses to the PiGeOn study survey ( n = 569; 63%). Results All interviewed participants gave consent to MTP without reservation. Three themes were identified and further supported via the survey responses: (1) Obvious agreement to participate , primarily because of desire for new treatments and altruism. (2) The black box – while participant knowledge of genomics was generally poor, faith in their oncologists and the scientific process encouraged them to proceed with testing; and (3) Survival is the priority – receiving treatment to prolong life was the priority for all participants, and other issues such as identification of a germline variant were generally seen as ancillary. Conclusion Having advanced cancer seemed to abrogate any potential concerns about MTP. Participants valued the research for varied reasons, but this was secondary to their priority to survive. While no negative attitudes toward MTP emerged, limitations in understanding of genomics were evident. Electronic supplementary material The online version of this article (10.1186/s12885-019-5920-x) contains supplementary material, which is available to authorized users.
A lthough obesity is a preventable condition, rates worldwide have doubled since 1980. 1 Being overweight or obese is the fifth leading risk factor for global deaths, 1 and excess weight significantly increases the risk of chronic illnesses such as cardiovascular disease, stroke, diabetes, and some cancers. 2,3 While it is perceived as a problem predominantly in industrialized nations, obesity is now a growing concern in developing countries 4 and poses a financial burden in many regions. In Canada, the estimated cost of obesity to the economy was $4.6 billion in 2008, up approximately 20% from the year 2000. 5 While province-specific Canadian data have been collected on an ongoing basis, and the epidemic rise in obesity has been noted in reports such as the recent Public Health Agency of Canada report, Obesity in Canada, 5 provincial obesity surveillance maps have not been published since 2002, when data from the 1995 to 1998 period were presented. 6 Our approach to data presentationusing colour-coded depictions of changes in obesity rates over time -is a graphic way to communicate the changing prevalence of obesity that is appropriate for both public and professional audiences. The purpose of this paper is to update Canada's obesity maps with data collected between 2000 and 2011 to more accurately reflect estimated obesity rates across Canada. METHODSSources of data were extracted from the Canadian Community Health Survey (CCHS); data included self-reported height and weight for 2000, 2003, 2005, and 2007-11. The data were drawn from annual health indicator profiles for each province as reported on the Statistics Canada website, 7 except for the year 2000, where data were provided in response to a request to Statistics Canada. 8 Body mass index (BMI) was calculated for all eligible respondents aged 18 and older based on their self-reported heights and weights,
BackgroundLittle is known about knowledge of, and attitudes towards, genome sequencing (GS) among individuals with a personal history of cancer who decide to undergo GS. This qualitative study aimed to investigate baseline knowledge and attitudes among individuals previously diagnosed with a cancer of likely genetic origin who have consented to GS.MethodsSemistructured interviews were conducted with purposively selected participants (n=20) from the longitudinal Psychosocial Issues in Genomic Oncology study, within a month of consenting to GS and prior to receiving any results. Participants were adults with a cancer of likely genetic aetiology who are undertaking GS as part of a larger genetic study.ResultsAnalysis identified three main themes: limited understanding of genomics; multifactorial motivation; and complex decision making. While motivations such as obtaining health information about self and family appear to be the main drivers for undertaking GS, these motivations are sometimes based on limited knowledge of the accuracy and utility of GS, creating unrealistic expectations. This in turn can prolong the deliberation process and lead to ongoing decisional conflict.ConclusionUnderstanding the degree and nature of patient understanding of GS, as well as their attitudes and decision-making processes, will enable healthcare professionals to better manage patient expectations and appropriately engage and support patients to make an informed decision when pursuing GS.
While genomics provides new clinical opportunities, its complexity generates uncertainties. This systematic review aimed to summarize what is currently known about the experience of uncertainty for adult patients undergoing cancer genomic testing. A search of five databases (2001 to 2018) yielded 6508 records. After removing duplicates, abstract/title screening, and assessment of full articles, ten studies were included for quality appraisal and data extraction. Qualitative studies were subjected to thematic analysis, and quantitative data were summarized using descriptive statistics. Cancer genomic results reduced uncertainty for patients regarding treatment decisions but did not reduce uncertainty in the risk context. Qualitative and quantitative data synthesis revealed four themes: (1) coexisting uncertainties, (2) factors influencing uncertainty, (3) outcomes of uncertainty, and (4) coping with uncertainty. Uncertainty can motivate, or be a barrier to, pursuing cancer genomic testing. Appraisal of uncertainty influences the patient experience of uncertainty, the outcome of uncertainty for patients, as well as the coping strategies utilized. While this systematic review found that appraisal of uncertainty is important to the patients' experience of uncertainty in the cancer genomic context, more mixed methods longitudinal research is needed to address the complexities that contribute to patient uncertainty across the process.
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