scholarly journals A personalized decision aid for prostate cancer shared decision making

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Hilary P. Bagshaw ◽  
Alejandro Martinez ◽  
Nastaran Heidari ◽  
David Scheinker ◽  
Alan Pollack ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Urinary Incontinence ◽  
Erectile Dysfunction ◽  
Side Effects ◽  
Decision Aid ◽  
Treatment Decision ◽  
Shared Decision ◽  
Treatment Alternatives ◽  
Patient Centric

Abstract Background A shared decision-making model is preferred for engaging prostate cancer patients in treatment decisions. However, the process of assessing an individual’s preferences and values is challenging and not formalized. The purpose of this study is to develop an automated decision aid for patient-centric treatment decision-making using decision analysis, preference thresholds and value elicitations to maximize the compatibility between a patient’s treatment expectations and outcome. Methods A template for patient-centric medical decision-making was constructed. The inputs included prostate cancer risk group, pre-treatment health state, treatment alternatives (primarily focused on radiation in this model), side effects (erectile dysfunction, urinary incontinence, nocturia and bowel incontinence), and treatment success (5-year freedom from biochemical failure). A linear additive value function was used to combine the values for each attribute (side effects, success and the alternatives) into a value for all prospects. The patient-reported toxicity probabilities were derived from phase II and III trials. The probabilities are conditioned on the starting state for each of the side effects. Toxicity matrices for erectile dysfunction, urinary incontinence, nocturia and bowel incontinence were created for the treatment alternatives. Toxicity probability thresholds were obtained by identifying the patient’s maximum acceptable threshold for each of the side effects. Results are represented as a visual. R and Rstudio were used to perform analyses, and R Shiny for application creation. Results We developed a web-based decision aid. Based on preliminary use of the application, every treatment alternative could be the best choice for a decision maker with a particular set of preferences. This result implies that no treatment has determinist dominance over the remaining treatments and that a preference-based approach can help patients through their decision-making process, potentially affecting compliance with treatment, tolerance of side effects and satisfaction with the decision. Conclusions We present a unique patient-centric prostate cancer treatment decision aid that systematically assesses and incorporates a patient’s preferences and values to rank treatment options by likelihood of achieving the preferred outcome. This application enables the practice and study of personalized medicine. This model can be expanded to include additional inputs, such as genomics, as well as competing, concurrent or sequential therapies.

Preparing Patients with Early Stage Prostate Cancer to Participate in Clinical Appointments Using a Shared Decision Making Training Video

2021 ◽  
pp. 0272989X2110285
Author(s):  
Karen Scherr ◽  
Rebecca K. Delaney ◽  
Peter Ubel ◽  
Valerie C. Kahn ◽  
Daniel Hamstra ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Early Stage ◽  
Controlled Trial ◽  
Treatment Decision ◽  
Shared Decision ◽  
Plain Language ◽  
Training Video ◽  
Video Group

Background Rates of shared decision making (SDM) are relatively low in early stage prostate cancer decisions, as patients’ values are not well integrated into a preference-sensitive treatment decision. The study objectives were to develop a SDM training video, measure usability and satisfaction, and determine the effect of the intervention on preparing patients to participate in clinical appointments. Methods A randomized controlled trial was conducted to compare a plain-language decision aid (DA) to the DA plus a patient SDM training video. Patients with early stage prostate cancer completed survey measures at baseline and after reviewing the intervention materials. Survey items assessed patients’ knowledge, beliefs related to SDM, and perceived readiness/intention to participate in their upcoming clinical appointment. Results Of those randomized to the DA + SDM video group, most participants (91%) watched the video and 93% would recommend the video to others. Participants in the DA + SDM video group, compared to the DA-only group, reported an increased desire to participate in the decision (mean = 3.65 v. 3.39, P < 0.001), less decision urgency (mean = 2.82 v. 3.39, P < 0.001), and improved self-efficacy for communicating with physicians (mean = 4.69 v. 4.50, P = 0.05). These participants also reported increased intentions to seek a referral from a radiation oncologist (73% v. 51%, P = 0.004), to take notes (mean = 3.23 v. 2.86, P = 0.004), and to record their upcoming appointments (mean = 1.79 v. 1.43, P = 0.008). Conclusions A novel SDM training video was accepted by patients and changed several measures associated with SDM. This may be a scalable, cost-effective way to prepare patients with early stage prostate cancer to participate in their clinical appointments. [Box: see text]

scholarly journals Shared Decision-Making in Patients With Prostate Cancer in Japan: Patient Preferences Versus Physician Perceptions

2018 ◽  
pp. 1-9 ◽  
Author(s):  
Ulrike Schaede ◽  
Jörg Mahlich ◽  
Masahiko Nakayama ◽  
Hisanori Kobayashi ◽  
Yuriko Takahashi ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
United States ◽  
Decision Making ◽  
Shared Decision Making ◽  
Patient Preferences ◽  
Treatment Decision ◽  
Japanese Patients ◽  
The United States ◽  
Treatment Decisions ◽  
Shared Decision

This article adds the Japanese perspective to our knowledge of shared decision-making (SDM) preferences by surveying patients with prostate cancer (PCA) and physicians in Japan. In 2015, 103 Japanese patients with PCA were asked about their SDM preferences by using an Internet-based 5-point-scale questionnaire. Concurrently, 127 Japanese physicians were surveyed regarding their perceptions of patient preferences on SDM. Drivers of preferences and perceptions were analyzed using univariable ordinal logistic regression and graphing the fitted response probabilities. Although 41% of both patients and physicians expressed and expected a desire for active involvement in treatment decisions (a higher rate than in a similar study for the United States in 2001), almost half the Japanese patients preferred SDM, but only 33% of physicians assumed this was their choice. That is, 29% of Japanese physicians underestimated patients’ preference for involvement in making treatment decisions. Patients with lower health-related quality of life (as measured by the Functional Assessment of Cancer Therapy-Prostate [FACT-P]) expressed a stronger preference for SDM. The study shows that the worse the medical situation, the more patients with PCA prefer to be involved in the treatment decision, yet physicians tend to underestimate the preferences of their patients. Perhaps in contrast to common assumptions, Japanese patients are as interested in being involved in decision making as are patients in the United States.

Shared decision-making in ovarian cancer.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 5549-5549 ◽  
Author(s):  
Lari B. Wenzel ◽  
Dana B Mukamel ◽  
Kathryn Osann ◽  
Lisa Sparks ◽  
Laura Jean Havrilesky ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Treatment Initiation ◽  
Treatment Decision ◽  
Shared Decision ◽  
Decisional Regret ◽  
Over Time

5549 Background: The value of shared decision-making in ovarian cancer is relatively unexplored. The goal of this study was to test a new decision aid, Patient Centered Outcome Aid (PCOA), that facilitates shared decision-making and helps ovarian cancer patients assimilate information and identify quality of life (QOL), toxicity and survival trade-offs between IP/IV therapy and IV therapy alone, based on their preferences and personal clinical characteristics. Methods: Participants were randomized to either PCOA (N=64) or usual care (N=59). Patient characteristics, QOL and shared decision-making data were collected at baseline and treatment initiation. Primary outcomes included satisfaction with treatment decision and decisional regret. Comparisons were made using t-tests and multivariate methods, adjusting for patient covariates. Multivariate linear models were used to investigate predictors of the primary outcomes. Results: Although satisfaction and decisional regret did not differ significantly by arm at any time point, the majority of PCOA patients indicated that the aid helped them understand treatment options and side effects. Notably, low shared decision-making and low QOL, were significant predictors of low satisfaction at treatment initiation (multiple r=0.76), six months (multiple r=0.48) and nine months (r=0.58). They were also significant predictors of decisional regret (multiple r=0.48 and 0.36 at 6 and 9 months). Patient covariates including age, stage, treatment and neoadjuvant status were not associated with differences in satisfaction or decisional regret. Conclusions: There were no clinically meaningful differences in satisfaction with the treatment decision, or decisional regret between the study arms. The absence of a difference may reflect the high degree of shared decision-making in both arms and greater disease severity in PCOA patients, who were more likely to report low baseline QOL and declining QOL over time. Both shared decision-making and quality of life were robust, independent predictors of satisfaction with the treatment decision over time. This implies that women who perceive themselves as less engaged in the decision process, and report poor QOL may benefit from a decision aid, in addition to physician counseling. Clinical trial information: NCT02259699.

scholarly journals Navigate: A study protocol for a randomized controlled trial of an online treatment decision aid for men with low risk prostate cancer and their partners

2020 ◽  
Author(s):  
Penelope Schofield ◽  
Karla Gough ◽  
Amelia Hyatt ◽  
Alan White ◽  
Mark Frydenberg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Decision Making ◽  
Decision Aid ◽  
Treatment Decision ◽  
Low Risk ◽  
Management Option ◽  
Risk Prostate Cancer ◽  
Low Risk Prostate Cancer

Abstract Background Active surveillance (AS) is the disease management option of choice for low risk prostate cancer. Despite this, men with low risk prostate cancer (LRPC) find management decisions distressing and confusing. We developed Navigate, an online decision aid to help men and their partners make management decisions consistent with their values. The aims are to evaluate the impact of Navigate on: uptake of AS; decision-making preparedness; decisional conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life and anxiety. In addition, the healthcare cost impact, cost-effectiveness and patterns of use of Navigate will be assessed. This paper describes the study protocol. Methods 304 men and their partners are randomly assigned one-to-one to Navigate or to the control arm. Randomisation is electronically generated and stratified by site. Navigate is an online decision aid that presents up-to-date, unbiased information on LRPC tailored to Australian men and their partners including each management option and potential side-effects; and an interactive values clarification exercise. Participants in the control arm will be directed to the website of Australia’s peak national body for prostate cancer. Eligible patients will be men within three months of being diagnosed with LRPC, aged 18 years or older and who are yet to make a treatment decision and who are deemed eligible for AS by their treating clinician, and who have internet access and sufficient English to participate. The primary outcome is self-reported uptake of AS as the first-line management option. Secondary outcomes include self-reported preparedness for decision-making; decisional conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life. Uptake of AS one month after consent will be determined through patient self-report. Men and their partners will complete study outcome measures before randomisation, and one, three and six months after study consent. Discussion The Navigate online decision aid has the potential to increase the choice of AS in LRPC, avoiding or delaying unnecessary radical treatments and associated side effects. In addition, Navigate is likely to reduce patients’ and partners’ confusion and distress in management decision-making, and increase their quality of life.

scholarly journals Late Effects Are Important Considerations in Initial Hodgkin Lymphoma Treatment Decision-Making According to Survivors

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2137-2137
Author(s):  
Anita J Kumar ◽  
Rachel Murphy-Banks ◽  
Ruth Ann Weidner ◽  
Susan K Parsons
Keyword(s):  
Decision Making ◽  
Side Effects ◽  
Hodgkin Lymphoma ◽  
Shared Decision Making ◽  
Late Effects ◽  
Initial Treatment ◽  
Treatment Options ◽  
Treatment Decision ◽  
Shared Decision ◽  
Treatment Decision Making

Introduction The treatment landscape of Hodgkin Lymphoma (HL) has undergone a revolution in recent years, providing multiple options for providers and patients in their shared goal for disease control. However, these successful treatment options (e.g. multi-agent chemotherapy, radiotherapy, or combined modality) come at a high cost in the form of late effects, with little known about long-term toxicity of novel agents (e.g., Brentuximab vedotin, immunotherapy). As part of an international effort to develop tools to enhance treatment decision-making for providers and patients, we developed a survey to learn about what role HL survivors played in their initial treatment decision(s) as well as to understand survivors' knowledge and experience of late effects. Methods The survey titled Understanding of Decision-Making among HL Survivors included three themes: 1) initial treatment plan; 2) role in decision-making about the plan and factors important to the treatment selection; and 3) understanding of late effects. The survey was initially piloted at a cancer conference in Spring 2019 after which modest revisions were made to improve clarity. The revised survey was then distributed nationally in a single push through the Leukemia & Lymphoma Society's voluntary email listserv (Summer 2019). Responses were captured in the HIPAA complaint, web-based application, REDCap®, and then analyzed with descriptive statistics. Results A total of 129 HL survivors responded to the survey. The majority of respondents (n=98, 76%) identified as female. While nearly half (46%) were between 1-5 years from treatment, 27% were <1 year off therapy or still in treatment, and 27% were treated > 5 years ago. Age distribution at diagnosis ranged from <18 years (n=3, 2%), 18-25 years (n=35, 27%), and >26 years (n=91, 71%). Two-thirds (n=83, 64%) of patients were treated with chemotherapy alone. Overall, 90% of survivors reported receiving ABVD or a close variant (e.g., AVD). The majority of survivors (n=88, 68%) reported only receiving one treatment option by their oncologist. Half (n=69, 54%) engaged in shared decision-making with their physician, with or without family/friends, 24% (n=31) deferred to their physician, 20% (n=26) decided on their own or with family/friend, and 2% (n=3) followed the plan determined by their physician and family on their behalf. Most respondents were treated in the community (n=77, 60%) with an additional 34% (n=44) reporting having been treated at an academic medical center. For 8 respondents (6%) the treatment site was categorized as other. Survivors were asked to rate the importance of factors in their initial treatment decision-making on a 3-point scale. Results were then dichotomized to important or not important. Health systems factors (e.g., cost, distance) were deemed less important, while patient-level factors (e.g., side effects, late effects) were widely endorsed (Table 1). The majority of survivors (n=107, 83%) were aware they are/may be at risk for late effects. Seventy percent (n=68 of 97) had been told at the time of discussion of treatment option(s) with their oncologist. The remainder (n=29 of 97, 30%) learned after completion of treatment or when transitioning care from their treating oncologist to survivorship or primary care. One third of respondents (n=46, 36%) reported they have been diagnosed with a late effect, which included substantial late effects of secondary malignancy (n=5, 11%) and cardiac toxicity (n=4, 9%). Discussion We report the results of a recent national survey of HL survivors, represented by an activated cohort that elects to participate in cancer advocacy groups. While two-thirds of respondents had little choice in initial treatment options, the majority endorsed the importance of side effects and late effects in treatment selection. Only half of survivors engaged in shared decision-making with their physician, indicating ample room for improvement and the development of tools to facilitate this process. Disclosures No relevant conflicts of interest to declare.

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