Patterns of decision making about cancer clinical trial participation among the online cancer treatment community: A collaboration between SWOG and NexCura.

2012 ◽  
Vol 30 (18_suppl) ◽  
pp. CRA6009-CRA6009 ◽  
Author(s):  
Joseph M Unger ◽  
Dawn L. Hershman ◽  
Kenda Burg ◽  
Carol Moinpour ◽  
Kathy S. Albain ◽  
...  
Keyword(s):  
Decision Making ◽  
Demographic Factors ◽  
Participation Rate ◽  
Treatment Decision ◽  
Trial Participation ◽  
Lower Income ◽  
Treatment Decision Making ◽  
Study Results ◽  
New Diagnosis ◽  
The Impact

CRA6009 Background: Studies have shown an association between socioeconomic status (SES) and quality of oncology care, but less is known about the impact of SES on decision-making about CT participation. Methods: We assessed patterns of CT treatment decision-making according to important SES and demographic factors (age, sex, race, income, education) in a large sample of patients surveyed via a web-based treatment decision tool (NexCura, The Woodlands, TX). Eligible patients had a new diagnosis of breast, lung, colorectal, or prostate cancer, and were >18. Logistic regression (conditioning on type of cancer) was used. Reasons for non-participation in CTs were assessed using pre-specified items about treatment, family, cost, and logistics. All data were self-reported. Results: 5,499 patients were surveyed from 2007-2011. 40% discussed CTs with their physician; this differed by age (42% <65 v. 29% >65), income (42% >$50k/yr v. 36% <$50k/yr), and education (42% >college degree (CD) v. 37% <CD). 45% of discussions led to offers of CT participation, and 51% of offers led to CT participation. The overall CT participation rate was 9%, differing by age, income, and education (see table below). In a multivariate model including all SES and demographic factors (plus covariates comorbidity status and “distance to clinic”, a surrogate for convenience), income remained a predictor of CT participation (OR 0.73, 95% CI, 0.57-0.94, p=.01). Even in patients >65, who are nearly universally covered by Medicare, lower income predicted reduced CT participation (age by income interaction test, p>.05). Cost concerns were much more evident among lower income patients (p=.0001). Conclusions: Lower income patients were less likely to participate in CTs, even when considering age group.A better understanding of why income is a barrier may help identify ways to make CTs better available to all patients, and would increase the generalizability of CT study results across all levels of SES. [Table: see text]

scholarly journals Patient Income Level and Cancer Clinical Trial Participation

2013 ◽  
Vol 31 (5) ◽  
pp. 536-542 ◽  
Author(s):  
Joseph M. Unger ◽  
Dawn L. Hershman ◽  
Kathy S. Albain ◽  
Carol M. Moinpour ◽  
Judith A. Petersen ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Universal Access ◽  
Participation Rate ◽  
Treatment Decision ◽  
Trial Participation ◽  
Lower Income ◽  
Clinical Trial Participation ◽  
Clinical Trial Results ◽  
The Impact

Purpose Studies have shown an association between socioeconomic status (SES) and quality of oncology care, but less is known about the impact of patient SES on clinical trial participation. Patients and Methods We assessed clinical trial participation patterns according to important SES (income, education) and demographic factors in a large sample of patients surveyed via an Internet-based treatment decision tool. Logistic regression, conditioning on type of cancer, was used. Attitudes toward clinical trials were assessed using prespecified items about treatment, treatment tolerability, convenience, and cost. Results From 2007 to 2011, 5,499 patients were successfully surveyed. Forty percent discussed clinical trials with their physician, 45% of discussions led to physician offers of clinical trial participation, and 51% of offers led to clinical trial participation. The overall clinical trial participation rate was 9%. In univariate models, older patients (P = .002) and patients with lower income (P = .001) and education (P = .02) were less likely to participate in clinical trials. In a multivariable model, income remained a statistically significant predictor of clinical trial participation (odds ratio, 0.73; 95% CI, 0.57 to 0.94; P = .01). Even in patients age ≥ 65 years, who have universal access to Medicare, lower income predicted lower trial participation. Cost concerns were much more evident among lower-income patients (P < .001). Conclusion Lower-income patients were less likely to participate in clinical trials, even when considering age group. A better understanding of why income is a barrier may help identify ways to make clinical trials better available to all patients and would increase the generalizability of clinical trial results across all income levels.

The impact of “significant others” on breast cancer patients’ treatment decision making.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 20-20
Author(s):  
Suepattra G. May ◽  
Katharine Rendle ◽  
Meghan Halley ◽  
Nicole Ventre ◽  
Allison W. Kurian ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cancer Patients ◽  
Medical Decision Making ◽  
Treatment Decision ◽  
Significant Others ◽  
Medical Decision ◽  
Breast Cancer Patients ◽  
Treatment Decision Making ◽  
The Impact

20 Background: Shared medical decision making (SDM) has been lauded by advocates for its potential to democratize the patient-physician relationship. However, the practice of SDM is still conceived of as largely a dyadic moment that exists between the patient and the physician. Few studies have looked at the role of significant others (spouses, partners, family members and friends) in decision making or considered how discussions and actions outside the consultation room affect a patient’s medical decisions. This prospective study investigated the impact of significant others on the decision making deliberations of newly diagnosed breast cancer patients. Methods: Forty-one newly diagnosed breast cancer patients were interviewed at four critical time points throughout treatment to explore how they deliberated decisions with both care providers and significant others. Surveys assessing HRQOL, role preferences and treatment satisfaction along with EHR abstraction augmented interview data. Grounded theory analysis was used to identify recurrent themes in the qualitative data, and survey data were analyzed using IBM SPSS Statistics 20. Results: Emergent themes from our analysis identified several factors that patients consider when faced with cancer treatment decisions, including 1) presentation of treatment options 2) patient or significant other conflict/concordance with care team recommendations 3) perceived risk of recurrence and 4) short and long term impact of treatment on daily life. Participants stressed the need for clinicians to view patients beyond diagnosis and recognize their larger care network as influential factors in their decision making. Conclusions: Our interviews highlight how the current healthcare delivery structure rarely acknowledges the circles of care that can exert influence on decision making. Lack of attention to non-clinical others can lead to sub-optimal medical decision making because these influences are not adequately understood by clinicians. Findings from this study suggest the need to enhance clinicians’ and researchers’ understanding of the influence of others in patients’ treatment decision making, enabling them to intervene in these practices.

scholarly journals Resisting recommended treatment for prostate cancer: a qualitative analysis of the lived experience of possible overdiagnosis

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026960 ◽  
Author(s):  
Kirsten McCaffery ◽  
Brooke Nickel ◽  
Kristen Pickles ◽  
Ray Moynihan ◽  
Barnett Kramer ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Lived Experience ◽  
Treatment Decision ◽  
Well Being ◽  
Management Options ◽  
Treatment Decision Making ◽  
Recommended Treatment ◽  
Qualitative Interview Study ◽  
The Impact

ObjectiveTo describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.DesignQualitative interview studySettingAustraliaParticipants11 men (aged 59–78 years) who resisted recommended prostate cancer treatment because of concerns about overdiagnosis and overtreatment.OutcomesReported experience of screening, diagnosis and treatment decision making, and its impact on psychosocial well-being, life and personal circumstances.ResultsMen’s accounts revealed profound consequences of both prostate cancer diagnosis and resisting medical advice for treatment, with effects on their psychological well-being, family, employment circumstances, identity and life choices. Some of these men were tested for prostate-specific antigen without their knowledge or informed consent. The men felt uninformed about their management options and unsupported through treatment decision making. This often led them to develop a sense of disillusionment and distrust towards the medical profession and conventional medicine. The findings show how some men who were told they would soon die without treatment (a prognosis which ultimately did not eventuate) reconciled issues of overdiagnosis and potential overtreatment with their own diagnosis and situation over the ensuing 1 to 20+ years.ConclusionsMen who choose not to have recommended treatment for prostate cancer may avoid treatment-associated harms like incontinence and impotence, however our findings showed that the impact of the diagnosis itself is immense and far-reaching. A high priority for improving clinical practice is to ensure men are adequately informed of these potential consequences before screening is considered.

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