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.
•Consumers are interested in cancer genomic testing if it gives actionable results.•Ability to predict risk, inform management, benefit families are motivators to test.•Patients are concerned about ...cost, confidentiality, utility, psychological harm.•Providers must educate and manage patient expectations of testing.
Single-gene testing is associated with psycho-social challenges for cancer patients. Genomic testing may amplify these. The aim of this study was to understand patients’ motivations and barriers to pursue cancer genomic testing, to enable healthcare providers to support their patients throughout the testing process and interpretation of test results.
Five databases were searched for original peer reviewed research articles published between January 2001 and September 2018 addressing motivation for genomic cancer testing. QualSyst was used to assess quality.
182 studies were identified and 17 were included for review. Studies were heterogenous. Both somatic and germline testing were included, and 14 studies used hypothetical scenarios. 3249 participants were analyzed, aged 18 to 94. Most were female and white. The most common diagnoses were breast, ovarian, lung and colorectal cancer. Interest in testing was high. Motivations included ability to predict cancer risk, inform disease management, benefit families, and understand cancer. Barriers included concerns about cost, privacy/confidentiality, clinical utility, and psychological harm.
Despite concerns, consumers are interested in cancer genomic testing if it can provide actionable results for themselves and their families.
Providers must manage understanding and expectations of testing and translate genetic information into health-promoting behaviours.
Objective
This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing.
Methods
We conducted a ...mixed‐methods study to explore patients' views on which MP results they would like to receive and why. Advanced cancer patients (n = 1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n = 20) participated in qualitative interviews.
Results
Almost all (96%) participants were interested in receiving results which would direct cancer treatment (ie, were actionable). A smaller majority wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out about germline findings, though not as a priority. Themes identified in interview data were: (a) Cancer is the focus; (b) Trust in clinicians; and (c) Respect for a right not to know.
Conclusions
The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options. They trusted their oncologists to help them navigate the results return process. While there was interest in knowing about other results, this was a lesser priority. Nevertheless, given high levels of interest in receiving all results, ethical aspects of not providing uninformative results requires further research, including a consideration of patient rationales for desiring this information and what health professionals can and should do to support patients in the absence of meaningful information being available.
Purpose
Fear of cancer recurrence/occurrence (FCR/O) is prevalent and associated with poorer psychological outcomes but can also motivate individuals to pursue genomic information about cancer risk. ...Guided by Protection Motivation Theory, this study investigated FCR/O prevalence and associated factors among probands previously diagnosed with a cancer of likely heritable origin, and their relatives, who had agreed to have germline genome sequencing.
Methods
Three hundred and forty-eight probands and 167 relatives completed the Concerns about Recurrence Questionnaire (adapted for occurrence for some relatives) within 1 month of agreeing to undertake genome sequencing. Linear regressions investigated demographic, disease, attitude and behavioral associations with FCR/O.
Results
Probands demonstrated greater FCR compared to relatives. In
probands
, greater FCR was associated with being female, non-English speaking at home, less time since diagnosis, greater intention to change behavior if gene variant found, lower perceived ability to cope with results, higher perceived susceptibility to having a recurrence, and more negative attitudes towards uncertainty. For
relatives with cancer
, greater FCR was associated with being male, greater intention to change behavior if a gene variant found, and higher perceived susceptibility to recurrence. In
relatives without cancer
, greater FCO was associated with not having had genetic testing prior to this study, lower perceived ability to cope with results, and higher perceived susceptibility to developing cancer.
Conclusion
Current findings on FCR/O prevalence and associated demographic and attitudinal variables in those who pursue genomic risk information might be used to target interventions that can prevent adverse psychological outcomes in vulnerable patients.
OBJECTIVES:Obesity is a growing problem in Canada and worldwide. While obesity maps that convey changing rates over time and geography provide a useful way to convey such information, regional ...obesity surveillance maps for Canada have not been published since 1998. This research provides a summary of changing Canadian obesity rates since that time.
METHODS:We computed estimated obesity rates for provinces and territories across Canada from 2000 to 2011. Data were based on Canadian Community Health Survey and corrected for self-report bias. Data reporting the estimated percent of the adult population who are obese were mapped over time overall and by sex according to Canadian province and territory.
RESULTS:The data indicate that the estimated prevalence of obesity across Canada has continued to increase over the past 11 years. Current rates exceed 30% in the Maritime provinces (Newfoundland, New Brunswick, Nova Scotia, Prince Edward Island) and in two territories (Northwest Territory, Nunavut). Data for men and women are generally consistent. The major increase in obesity appears to have occurred in the first part of this period, with relatively stable rates found from 2008 to 2011. However, obesity rates are still climbing, warranting continued surveillance efforts.
CONCLUSION:Maps showing changing regional obesity rates provide a compelling pan-Canadian portrait that can lead to an impetus for action for the public, health care providers, and decision makers. Such colour-coded maps offer an efficient way to convey complex data that transcends language differences and personalizes the data for the viewer.
There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in ...this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up (prior to receiving results). Participants (
= 353) had negative attitudes towards uncertainty (
= 4.03, SD 0.68) at baseline, and low levels of uncertainty at three (
= 8.23, SD 7.37) and 12 months (
= 7.95, SD 7.64). Uncertainty about genome sequencing did not change significantly over time
(210) = 0.660,
= 0.510. Greater perceived susceptibility for cancer
(348) = 0.14,
<
.01, fear of cancer recurrence
(348) = 0.19,
<
.01, perceived importance of genome sequencing
(350) = 0.24,
<
.01, intention to change behavior if a gene variant indicating risk is found
(349) = 0.29,
<
.01, perceived ability to cope with results
(349) = 0.36,
<
.01, and satisfaction with decision to have genome sequencing
(350) = 0.52,
<
.01 were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses B = -2.364 -4.238, -0.491,
= 0.014, lower perceived ability to cope with results B = -0.1.881 -3.403, -0.359,
= 0.016 at baseline, greater anxiety about genome sequencing (avoidance) B = 0.347 0.148, 0.546,
= 0.0012 at 3 months, and greater perceived uncertainty about genome sequencing B = 0.494 0.267, 0.721
= 0.000 at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety (avoidance) about genome sequencing at 12 months B = 0.291 0.072, 0.509,
= 0.009. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity.
Limited research has indicated that despite their overwhelming interest in tumor molecular profiling (MP),11Abbreviations: Accessibility and Remoteness Index of Australia (ARIA): an indication of the ...proximity of service centers relative to where the participant lives. Eastern Cooperative Oncology Group (ECOG): A performance status measure to quantify cancer patients' general well-being and activities of daily life. Molecular Therapeutics (MoST) Program: A research program which forms a component of the Australian Genomic Cancer Medicine Program. The Psychosocial Issues in Genomic Oncology (PiGeOn) Project: a longitudinal, mixed methods psychosocial sub-study of the MoST Program which aims to examine the psychosocial, behavioral and ethical impact of MP. Tumor molecular profiling (MP): a form of genomic testing, that involves characterization of tumor-derived DNA and RNA. cancer patients have poor knowledge about MP. The current study aimed to investigate demographic and psychological predictors of knowledge and perceived importance of MP in an advanced cancer patient cohort. Eligible participants had advanced solid cancers of any histological type with sufficient accessible tissue for MP and were enrolled in the Molecular Screening and Therapeutics (MoST) Program. A questionnaire was completed by 1074 participants (91% response rate) after consent, prior to undergoing MP. Overall, participants had poor to moderate knowledge of MP, yet perceived MP to have high importance. Higher education, speaking English at home, and greater satisfaction with the decision to undergo MP were associated with higher knowledge scores. More negative attitudes towards uncertainty, greater self-efficacy to cope with results, and lower perceived likelihood of cancer progression were associated with greater perceived importance of MP. Less educated participants and those who do not speak English at home will need clear explanations, visual aids and ample opportunity to ask questions about MP at the time of their decision-making. Clinicians also need to consider psychological factors relevant to patients' decision to pursue MP. Given the increased awareness of and demand for cancer genomic information and the rapidly changing nature of the actionability of MP, these findings will help inform an important ongoing debate on how to facilitate ethical and informed consent and manage patient expectations about personalized treatments.
Cancer‐related illness uncertainty has been associated with poorer psychological outcomes for patients. While some cancer patients believe obtaining genomic information will reduce their illness ...uncertainty, the complexity of genomics has the potential to compound illness uncertainty. The aim of this mixed‐methods study was to investigate uncertainty in patients with a cancer of likely heritable origin immediately following their decision to have germline genome sequencing. Participant (N = 348) negative attitudes toward uncertainty were associated with higher satisfaction with decision to have germline genome sequencing and greater fear of cancer recurrence. Thematic analysis of semi‐structured interviews with a subset of participant (N = 20) revealed the following four themes: (a) germline genome sequencing to reduce illness uncertainty; (b) germline genome sequencing to reduce uncertainty related to relatives’ risk; (c) uncertainty generated by germline genome sequencing; and (d) resilience and coping with uncertainty. This study demonstrated the complexity of uncertainty in germline genome sequencing in cancer patients. These results provide genomic healthcare professionals with important information about cancer patient's motivation to pursue germline genome sequencing, the specific uncertainties generated by germline genome sequencing, and how cancer patients cope with uncertainty.
Aim
The risk of dying from COVID‐19 is higher for those who are older, immune‐compromised, or chronically ill. Vaccines are an effective strategy in reducing mortality and morbidity from COVID‐19. ...However, for COVID‐19 vaccination programs to reach full potential, vaccines must be taken up by those at greatest risk, such as cancer patients. Understanding the perspectives of all stakeholders involved in cancer patient COVID‐19 vaccine uptake will be critical to ensuring appropriate support, and information is provided to facilitate vaccination. The aim of this research was to explore the longitudinal views of cancer stakeholders regarding COVID‐19 vaccination.
Methods
Semistructured interviews were conducted with cancer patients (n = 23), family members (n = 10), cancer health professionals (n = 19), and representatives of cancer nongovernment organizations (n = 7) across Australia 6 and 12 months postrecruitment. Transcripts were thematically analyzed, using an inductive approach.
Results
All stakeholder groups expressed mostly positive attitudes toward COVID‐19 vaccination, with the following key themes identified: (1) high motivation—vaccination perceived as offering health protection and hope; (2) hesitancy—concern about vaccine hesitancy among the general population, with a minority hesitant themselves; (3) confusion and frustration—regarding the vaccine rollout and patient eligibility; (4) uncertainty—about vaccination in the context of cancer; (5) access to vaccination; and (6) desire for expert individualized advice—on vaccine interaction with cancer treatments.
Conclusion
These findings highlight the COVID‐19 vaccine concerns and information needs of cancer stakeholders. Policymakers need to provide clear tailored information regarding vaccine eligibility, accessibility, benefits, and risks to facilitate vaccine uptake.
Cancer stakeholders’ perspectives of COVID‐19 vaccination.
Objective
To determine whether the existing Multidimensional Impact of Cancer Risk Assessment (MICRA) scale, which assesses impact of receiving genetic test results on individuals being assessed for ...cancer risk, can be successfully adapted to cancer patients experiencing prolonged waiting for results of germline genome sequencing (GS).
Methods
Patients previously diagnosed with likely hereditary cancer (n = 250) who were waiting for germline GS results completed questionnaires 3 months after baseline. We adapted the MICRA to measure anxiety associated with waiting for results, and assessed factor structure, internal consistency, test–retest reliability and construct validation.
Results
Factor analysis revealed four factors: distress, positive experience, family support and uncertainty. Internal consistency for each sub‐scale was high with the values of Cronbach's alpha for the distress, positive experiences, family support and uncertainty sub‐scales 0.92, 0.88, 0.92 and 0.87, respectively. Test–retest reliability was poor, with intra‐class correlations of 0.53, 0.13, 0.33 and 0.52 for the four factors, respectively. Construct validation showed large correlations between the MICRA distress and uncertainty sub‐scale scores and the Impact of Events score intrusion (0.42 and 0.62, respectively) and IES avoidant thinking sub‐scales (0.40 and 0.58, respectively) but not the Hospital Anxiety and Depression Scale sub‐scales.
Conclusions
The adapted MICRA identified test‐related anxiety and uncertainty in a population of cancer patients waiting for germline GS results. Results suggest that the distress and uncertainty sub‐scales of the adapted measure are most useful in this context.
Key points
The adapted Multidimensional Impact of Cancer Risk Assessment (MICRA) scale identifies germline genome sequencing (GS) test‐related anxiety and uncertainty in cancer patients undergoing prolonged waiting for results
Use of the adapted MICRA scale will enable identification of patients who require psychological support while awaiting germline GS test results
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