scholarly journals What matters in clinical trial decision‐making: a systematic review of interviews exploring cancer patients’ experiences

2019 ◽  
Vol 33 (2) ◽  
pp. 266-278 ◽  
Author(s):  
Trine A. Gregersen ◽  
Regner Birkelund ◽  
Maiken Wolderslund ◽  
Mette Løwe Netsey‐Afedo ◽  
Karina Dahl Steffensen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Decision Making ◽  
Cancer Patients ◽  
What Matters

scholarly journals “When Offered to Participate”: A Systematic Review and Meta-Analysis of Patient Agreement to Participate in Cancer Clinical Trials

2020 ◽  
Author(s):  
Joseph M Unger ◽  
Dawn L Hershman ◽  
Cathee Till ◽  
Lori M Minasian ◽  
Raymond U Osarogiagbon ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Decision Making ◽  
Clinical Trials ◽  
Cancer Patients ◽  
Meta Analysis ◽  
Cancer Control ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Black Patients

Abstract Background Patient participation in clinical trials is vital for knowledge advancement and outcomes improvement. Few adult cancer patients participate in trials. Although patient   decision-making about trial participation has been frequently examined, the participation rate for patients actually offered a trial is unknown. Methods A systematic review and meta-analysis using 3 major search engines was undertaken. We identified studies from January 1, 2000, to January 1, 2020, that examined clinical trial participation in the United States. Studies must have specified the numbers of patients offered a trial and the number enrolled. A random effects model of proportions was used. All statistical tests were 2-sided. Results We identified 35 studies (30 about treatment trials and 5 about cancer control trials) among which 9759 patients were offered trial participation. Overall, 55.0% (95% confidence interval [CI] = 49.4% to 60.5%) of patients agreed to enroll. Participation rates did not differ between treatment (55.0%, 95% CI = 48.9% to 60.9%) and cancer control trials (55.3%, 95% CI = 38.9% to 71.1%; P = .98). Black patients participated at similar rates (58.4%, 95% CI = 46.8% to 69.7%) compared with White patients (55.1%, 95% CI = 44.3% to 65.6%; P = .88). The main reasons for nonparticipation were treatment choice or lack of interest. Conclusions More than half of all cancer patients offered a clinical trial do participate. These findings upend several conventional beliefs about cancer clinical trial participation, including that Black patients are less likely to agree to participate and that patient decision-making is the primary barrier to participation. Policies and interventions to improve clinical trial participation should focus more on modifiable systemic structural and clinical barriers, such as improving access to available trials and broadening eligibility criteria.

scholarly journals P077 What matters to Ulcerative Colitis patients when they make treatment decisions? A systematic review

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S180-S180
Author(s):  
A M Folan ◽  
G Jones ◽  
D Baker ◽  
S Brown ◽  
M Lee ◽  
...  
Keyword(s):  
Systematic Review ◽  
Ulcerative Colitis ◽  
Decision Making ◽  
Mixed Methods ◽  
Elective Surgery ◽  
Treatment Decisions ◽  
Physical Symptoms ◽  
Adherence To Medication ◽  
What Matters

Abstract Background The decision for ulcerative colitis (UC) patients to opt for elective surgery or continue medical treatment is dependent on patient preferences taking into account a range of factors. In addition to choosing between medical and surgical treatment, patients undergoing elective surgery are presented with a further decision regarding which operation to choose. The aim of this systematic review is to identify and understand what matters to UC patients when they are making these decisions. Methods Five electronic databases (PubMed, Scopus, CINAHL, Medline, and Embase) were searched for relevant literature up to 15 October 2020. Qualitative, quantitative and mixed-methods studies were included in this review. Studies reporting on what was important to UC patients (over 16 years of age) when they make treatment decisions were included. The Mixed Methods Appraisal Tool was used to assess the quality of the papers. Thematic analysis was used to analyse the data. Results The searches identified 6,917 papers and a final 19 (eight quantitative, seven qualitative, four mixed methods) papers were included. All studies were published since 2007 and included a total of 3,328 participants from nine countries. Five overarching themes (and their associated 20 sub-themes) were generated to describe the factors reported as important to UC patients in making treatment decisions. These were: 1. Information provision (information content, knowledge about their illness, quality of information); 2. Impact of the treatment upon daily life (controlling physical symptoms, quality of life); 3. Levels of risk (trade-off, high risk, concern and worry); 4. Burden of treatment (the need to see benefits of medication, route and size of medication, side effects, dosing frequency, costs, effort of being the patient, adherence to medication, surgery concerns, timing of surgery); and 5. Patient-clinician relationship (shared decision-making, communication, mismatch between what clinicians and patients consider to be important). Conclusion Communication between patients and their IBD teams should take into account the range of factors that influence their treatment decision making. Decision support interventions that incorporate such factors may better support the patient-clinician relationship and improve knowledge of treatment options and how these impact on what matters to them. Future studies are needed to determine which factors identified in this review are dominant.

scholarly journals Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review

2018 ◽  
Vol 101 (7) ◽  
pp. 1157-1174 ◽  
Author(s):  
Eden G. Robertson ◽  
Claire E. Wakefield ◽  
Christina Signorelli ◽  
Richard J. Cohn ◽  
Andrea Patenaude ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Decision Making ◽  
Shared Decision Making ◽  
Pediatric Oncology ◽  
Shared Decision ◽  
Oncology Clinical Trial ◽  
Clinical Trial Enrollment

Why Cancer Patients Enter Randomized Clinical Trials: Exploring the Factors That Influence Their Decision

2004 ◽  
Vol 22 (21) ◽  
pp. 4312-4318 ◽  
Author(s):  
James R. Wright ◽  
Timothy J. Whelan ◽  
Susan Schiff ◽  
Sacha Dubois ◽  
Dauna Crooks ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Clinical Trials ◽  
Logistic Regression ◽  
Cancer Patients ◽  
Randomized Clinical Trials ◽  
Univariate Analysis ◽  
Multivariate Logistic Regression Model ◽  
Decision Making Process ◽  
Trial Entry

Purpose Few interventions have been designed and tested to improve recruitment to clinical trials in oncology. The multiple factors influencing patients' decisions have made the prioritization of specific interventions challenging. The present study was undertaken to identify the independent predictors of a cancer patient's decision to enter a randomized clinical trial. Methods A list of factors from the medical literature was augmented with a series of focus groups involving cancer patients, physicians, and clinical research associates (CRAs). A series of questionnaires was developed with items based on these factors and were administered concurrently to 189 cancer patients, their physicians, and CRAs following the patient's decision regarding trial entry. Forward logistic regression modeling was performed using the items significantly correlated (by univariate analysis) with the decision to enter a clinical trial. Results A number of items were significantly correlated with the patient's decision. In the multivariate logistic regression model, the patient's perception of personal benefit was the most important, with an odds ratio (OR) of 3.08 (P < .05). CRA-related items involving supportive aspects of the decision-making process were also important. These included whether the CRA helped with the decision (OR = 1.71; P < .05), and whether the decision was hard for the patient to make (OR = 0.52; P < .05). Conclusion Strategies that better address the potential benefits of trial entry may result in improved accrual. Interventions or aids that focus on the supportive aspects of the decision-making process while respecting the need for information and patient autonomy may also lead to meaningful improvements in accrual.

Information when patients participate in a phase I trial: A systematic review.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 85-85
Author(s):  
Katrine Toubro Gad ◽  
Ulrik Niels Lassen ◽  
Paul Morten Mau Sorensen ◽  
Mette Terp Høybye ◽  
Christoffer Johansen
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Phase I ◽  
Cancer Patients ◽  
Phase I Trial ◽  
Risk Of Bias ◽  
Phase I Trials ◽  
Potential Value ◽  
New Anticancer Drugs ◽  
Unrealistic Expectations

85 Background: While phase I trials are essential for the development of new anticancer drugs, there is a limited chance of benefitting for cancer patients participating in such trials. The information dialogue is therefore of substantial importance for providing a foundation to make a decision, and the support from relatives of potential value for the patient. This systematic review investigated patients’ prerequisites for deciding to participate in a phase I trial by summarizing the existing knowledge regarding patients’ decision-making when entering a phase I trial, and patients’ and their relatives’ perception of the information prior to enrollment. Methods: The review is based on the principles of Preferred Reporting Items for Systematic Reviews. A comprehensive systematic search was performed using the PubMed, Embase and PsycInfo databases and supplemented by a search for unpublished literature. Results: We identified 36 studies for inclusion in this review. When patients are offered participation in a phase I trial, information procedures as well as the patients’ individual approach influence the decision-making and the perception of the information provided. Across the studies exploring patients’ perception of information, there was a limited understanding of trial purpose and unrealistic expectations of benefit. The relatives’ perception of information remains unexplored. Evaluation of the included studies demonstrated a comprehensive risk of bias in the majority of studies. Conclusions: The information dialogue between physician and the patient concerning participation in a phase I trial seems to benefit from exact information taking account of the perspectives for each individual patient as well as the need for further discussion of trial. While relatives intuitively function as resources for patients entering a phase I trial, this topic is still not investigated.

Decision Making in Cancer Prevention and Control

2018 ◽  
Author(s):  
Erin M. Ellis ◽  
Rebecca A. Ferrer
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
High Stakes ◽  
Life And Death ◽  
Fundamental Knowledge ◽  
And Control

Being diagnosed with cancer introduces the need to make many high-stakes decisions about treatments, clinical trial participation, palliative care, advanced care planning, and (sometimes) end-of-life preferences. These decisions can be intensely emotional themselves, and occur within the affectively laden context of cancer-related issues, such as symptom management, interpersonal concerns, and existential questions about life and death. This chapter outlines how affect/emotion influences several decisions faced by cancer patients, and how emotions are relevant to the interpersonal context in which these decisions occur. Emotion has pervasive and predictable—sometimes deleterious and sometimes advantageous—influences on decision making. Fundamental knowledge regarding how affect influences cancer-related decision making could be leveraged to develop interventions to optimize decisions about treatment, clinical trial participation, and palliative care among cancer patients and survivors, thereby improving cancer-related outcomes.

Sign in / Sign up

Export Citation Format

Share Document