scholarly journals Awareness, knowledge, perceived benefits, and barriers regarding precision medicine and willingness to participate in a national registry: Comparison of cancer patients and the general population (Preprint)

JMIR Cancer ◽  
10.2196/13984 ◽  
2019 ◽  
Author(s):  
Mangyeong Lee ◽  
Juhee Cho ◽  
Sun-Young Kong ◽  
JunghHee Yoon ◽  
Danbee Kang ◽  
...  
2021 ◽  
Author(s):  
Mangyeong Lee ◽  
Juhee Cho ◽  
Sun-Young Kong ◽  
Junghee Yoon ◽  
Danbee Kang ◽  
...  

Abstract Background Precision medicine (PM) is a growing area of interest in cancer care. However, relatively little is known about the public attitudes toward PM and the factors associated with the willingness to participate in the construction of national registries for PM. Methods A cross-sectional survey was conducted with 1,500 cancer patients and 1,496 general population in South Korea from November 2016 to February 2017. We evaluated cancer patients’ awareness, knowledge, as well as perceived benefits and barriers regarding precision medicine (PM), and their willingness to participate in a national registry for PM, compared to the general population. Logistic regression analysis was performed to identify the factors associated with the willingness to participate in a national registry for PM. Results 1,500 cancer patients and 1,496 general population were recruited for the study. Cancer patients were less likely to have heard of PM than the general population (20.0% and 33.1%, P < .001), 34.2% of the participants knew the correct definition of PM. Cancer patients were more likely to However, fewer study participants in both groups said they would like to share their personal health data for PM, compared to the number of people who are willing to participate. Cancer patients (aOR 2.98, 95% CI, 2.47–3.61), participants who had heard of PM before (aOR 1.40, 95% CI, 1.00-1.95), had greater perceived benefits (aOR, 2.48, 95% CI, 1.88–3.27) and fewer perceived barriers (aOR 1.57, 95% CI, 1.18–2.08) regarding PM were more likely to have the willingness to participate in the registry compared to those who did not. Conclusions Cancer patients were more likely to have greater perceived benefits of PM and higher willingness to participate in the related study than the general population. However, both two groups were still informed about PM well. This study suggests considering the provision of information and education about PM such as expected values and required roles both to the general population and cancer patients.


2019 ◽  
Author(s):  
Mangyeong Lee ◽  
Juhee Cho ◽  
Sun-Young Kong ◽  
JunghHee Yoon ◽  
Danbee Kang ◽  
...  

BACKGROUND Precision medicine (PM) is a growing area of interest in cancer care. Although the terms ‘precision medicine’ and ‘personalized medicine’ are used interchangeably, the former may be new both to cancer patients and the general population. Most previous studies evaluated peoples’ attitudes towards genetic testing as a part of personalized medicine and included a single stakeholder, either patients or the general population. Few studies have evaluated cancer patients’ knowledge and perception regarding PM. OBJECTIVE To evaluate cancer patients’ awareness, knowledge, as well as perceived benefits and barriers regarding PM, and their willingness to participate in a national registry for PM, in comparison to those of the general population. METHODS We conducted a cross-sectional survey on 1,500 consecutive cancer patients enrolled at two university-based cancer hospitals in Seoul, Korea; 1,500 people who were representative of the Korean population were enrolled as controls. Multivariable logistic regression was conducted to identify the factors associated with a willingness to participate in a national registry for PM. RESULTS : In the total population, 20.0% of the cancer patients had heard of PM and 35.1% were able to accurately define it. Cancer patients were three times likelier to express a willingness to participate in a national registry for PM than the general population (95% confidence interval [CI], 2.47-3.61). Participants who had heard of PM (cancer patients: adjusted odds ratio (aOR) = 1.40, 95% CI, 1.00-1.95; general population: aOR = 2.04, 95% CI, 1.62-2.56) and who had a more positive perception of the PM-related benefits (cancer patients: aOR = 2.48, 95% CI, 1.88-3.27; general population: aOR = 1.34, 95% CI, 1.05-1.71) were likelier to be willing to participate in a national registry for PM. CONCLUSIONS While PM is gaining importance in clinical settings, a majority of cancer patients are not well-informed about it. Nevertheless, the patients in our study perceived PM as being associated with various benefits and showed a willingness to participate in a national registry for PM. Considerable efforts need to be taken to educate the public and advocate participation in studies on PM


BMC Cancer ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Mikael Segerlantz ◽  
Anna Axmon ◽  
Rebecca Gagnemo Persson ◽  
Eva Brun ◽  
Gerd Ahlström

Abstract Background The longevity for people with intellectual disability (ID) has significantly increased in developed countries during the past decades. Consequently, the incidence of cancer is expected to increase in this group. The aim of the present study was to investigate the prescription of pain medication in older cancer patients with intellectual disability (ID) compared to older patients in the general population, surviving or living with a cancer diagnosis. Methods This Swedish national registry-based study, included people with ID aged 55 years or older in 2012, and alive at the end of that year (ID cohort, n = 7936). For comparisons, we used a referent cohort, one-to-one matched with the general population by year of birth and sex (gPop cohort, n = 7936). People with at least one diagnosis of cancer during 2002–2012 were identified using the Swedish National Patient Register, resulting in 555 cancer patients with ID and 877 cancer patients from the general population. These two cohorts of cancer patients were compared with respect to prescription of pain medication for the period 2006–2012. Outcome data were aggregated so that each patient was categorized as either having or not having at least one prescription of each investigated drug group during the study period, and relative risks (RRs) for prescription were estimated for prescription in the ID cohort vs the gPop cohort. Results Cancer patients with ID were less likely than cancer patients in the gPop cohort to have at least one prescription of COX inhibitors (RR 0.61) and weak opioids (RR 0.63). They were, however, more likely to be prescribed paracetamol (RR 1.16), antidepressants (RR 2.09), anxiolytics (RR 2.84), and “other hypnotics, sedatives, and neuroleptics” (RR 1.39). No statistically significant differences between the two cohorts were found for strong opioids, antiepileptics, tricyclic antidepressants, or hypnotics and sedatives. Conclusion In the studied cohort of older people surviving or living with cancer, prescriptions for pain-treatment was less common in patients with ID compared to the general population. These results may suggest that pain is not sufficiently treated among cancer patients with ID, a situation that most likely would compromise the quality of life in this group.


2020 ◽  
Vol 26 (42) ◽  
pp. 7655-7671 ◽  
Author(s):  
Jinfeng Zou ◽  
Edwin Wang

Background: Precision medicine puts forward customized healthcare for cancer patients. An important way to accomplish this task is to stratify patients into those who may respond to a treatment and those who may not. For this purpose, diagnostic and prognostic biomarkers have been pursued. Objective: This review focuses on novel approaches and concepts of exploring biomarker discovery under the circumstances that technologies are developed, and data are accumulated for precision medicine. Results: The traditional mechanism-driven functional biomarkers have the advantage of actionable insights, while data-driven computational biomarkers can fulfill more needs, especially with tremendous data on the molecules of different layers (e.g. genetic mutation, mRNA, protein etc.) which are accumulated based on a plenty of technologies. Besides, the technology-driven liquid biopsy biomarker is very promising to improve patients’ survival. The developments of biomarker discovery on these aspects are promoting the understanding of cancer, helping the stratification of patients and improving patients’ survival. Conclusion: Current developments on mechanisms-, data- and technology-driven biomarker discovery are achieving the aim of precision medicine and promoting the clinical application of biomarkers. Meanwhile, the complexity of cancer requires more effective biomarkers, which could be accomplished by a comprehensive integration of multiple types of biomarkers together with a deep understanding of cancer.


Author(s):  
Katja Leuteritz ◽  
Diana Richter ◽  
Anja Mehnert-Theuerkauf ◽  
Jens-Uwe Stolzenburg ◽  
Andreas Hinz

Abstract Purpose Quality of life (QoL) has been the subject of increasing interest in oncology. Most examinations of QoL have focused on health-related QoL, while other factors often remain unconsidered. Moreover, QoL questionnaires implicitly assume that the subjective importance of the various QoL domains is identical from one patient to the next. The aim of this study was to analyze QoL in a broader sense, considering the subjective importance of the QoL components. Methods A sample of 173 male urologic patients was surveyed twice: once while hospitalized (t1) and once again 3 months later (t2). Patients completed the Questions on Life Satisfaction questionnaire (FLZ-M), which includes satisfaction and importance ratings for eight dimensions of QoL. A control group was taken from the general population (n = 477). Results Health was the most important QoL dimension for both the patient and the general population groups. While satisfaction with health was low in the patient group, the satisfaction ratings of the other seven domains were higher in the patient group than in the general population. The satisfaction with the domain partnership/sexuality showed a significant decline from t1 to t2. Multiple regression analyses showed that the domains health and income contributed most strongly to the global QoL score at t2 in the patient group. Conclusion Health is not the only relevant category when assessing QoL in cancer patients; social relationships and finances are pertinent as well. Importance ratings contribute to a better understanding of the relevance of the QoL dimensions for the patients.


2000 ◽  
Vol 40 (3) ◽  
pp. 219-229 ◽  
Author(s):  
Lena-Marie Petersson ◽  
Gunilla Berglund ◽  
Ola Brodin ◽  
Bengt Glimelius ◽  
Per-Olow Sjödén

PLoS ONE ◽  
2012 ◽  
Vol 7 (12) ◽  
pp. e52457 ◽  
Author(s):  
Kyu-Won Jung ◽  
Sohee Park ◽  
Aesun Shin ◽  
Chang-Mo Oh ◽  
Hyun-Joo Kong ◽  
...  

2018 ◽  
Vol 36 (1) ◽  
pp. 55-68 ◽  
Author(s):  
Daisy E. Collins ◽  
Sarah J. Ellis ◽  
Madeleine M. Janin ◽  
Claire E. Wakefield ◽  
Kay Bussey ◽  
...  

Background: One in four school-aged children is bullied. However, the risk may be greater for childhood cancer patients/survivors (diagnosed <18 years), because of symptoms of the disease and treatment that may prejudice peers. While the serious consequences of bullying are well documented in the general population, bullying may have even greater impact in children with cancer due to the myriad of challenges associated with treatment and prolonged school absence. Objective: To summarize the state of evidence on bullying in childhood cancer patients/survivors; specifically, the rate and types of bullying experienced and the associated factors. Method: We searched five electronic databases from inception to February 2018 for original research articles reporting on bullying in childhood cancer patients/survivors. Results: We identified 29 eligible articles, representing 1,078 patients/survivors ( M = 14.35 years). Self-reports from patients/survivors revealed a considerably higher rate of bullying (32.2%) compared with the general population (25%). Our review identified little information on the factors associated with bullying in patients/survivors. However, the bullying described tended to be verbal and was often related to the physical side effects of treatment, indicating that differences in appearance may prejudice peers. It was further suggested that educating the child’s classmates about cancer may prevent bullying. Conclusions: Our findings confirm that bullying is a significant challenge for many childhood cancer patients/survivors. Additional studies are needed to identify factors that may influence the risk of bullying, which will inform the development of evidence-based interventions and guidelines to prevent bullying in childhood cancer patients/survivors.


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