Dataset Information

Provider-reported challenges and barriers to referring patients to neuro-oncology clinical trials: a report from the Society for Neuro-Oncology member survey.

ABSTRACT: Background:Whereas much information exists in general oncology regarding the barriers to clinical trial referral, those specific to neuro-oncology are not yet well known. Trial barriers lead to lower patient accrual, which can lead to less-efficient clinical trials and slower improvement of the standard of care, which may negatively effect patient outcomes. Thus, the aim of this study was to determine the clinical trial referral barriers that are specific to neuro-oncology to improve trial accrual rates. Methods:An electronic survey was completed by 426 Society for Neuro-Oncology members, of whom 372 are included in this report. Descriptive statistics, including frequencies, means, and proportions, were used to characterize our survey sample. Results:Only 22% of participants reported that their center tracks referrals to clinical trials inside as well as outside their own institution, with an estimate of less than 30% of patients referred. The most commonly reported provider-referral barrier was finding ongoing trials in the patient's geographic area. Providers also perceived that while considering participation in a trial their patients may not qualify for any trials, and if they do, may be unable to travel to the study site for follow-up. Additionally, practice location and provider and institution type all influenced referral patterns. Conclusion:Efforts should be made to broaden trial availability and eligibility criteria, improve trial referral tracking, and ensure patients and their caregivers understand the goals and importance of clinical trials to reduce barriers and improve trial participation.

SUBMITTER: Rogers JL

PROVIDER: S-EPMC7104882 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Provider-reported challenges and barriers to referring patients to neuro-oncology clinical trials: a report from the Society for Neuro-Oncology member survey.

Rogers James L JL Acquaye Alvina A Vera Elizabeth E Bates Amanda A Wen Patrick Y PY Armstrong Terri S TS

Neuro-oncology practice 20190910 1

<h4>Background</h4>Whereas much information exists in general oncology regarding the barriers to clinical trial referral, those specific to neuro-oncology are not yet well known. Trial barriers lead to lower patient accrual, which can lead to less-efficient clinical trials and slower improvement of the standard of care, which may negatively effect patient outcomes. Thus, the aim of this study was to determine the clinical trial referral barriers that are specific to neuro-oncology to improve tri ...[more]

PMID: 32257283

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Project description:BackgroundNovel precision oncology trial designs, such as basket and umbrella trials, are designed to test new anticancer agents in more effective and affordable ways. However, they present some ethical concerns referred to scientific validity, risk-benefit balance and informed consent. Our aim is to discuss these issues in basket and umbrella trials, giving examples of two ongoing cancer trials: NCI-MATCH (National Cancer Institute - Molecular Analysis for Therapy Choice) and Lung-MAP (Lung Cancer Master Protocol) study.Main bodyWe discuss three ethical requirements for clinical trials which may be challenged in basket and umbrella trial designs. Firstly, we consider scientific validity. Thanks to the new trial designs, patients with rare malignancies have the opportunity to be enrolled and benefit from the trial, but due to insufficient accrual, the trial may generate clinically insignificant findings. Inadequate sample size in study arms and the use of surrogate endpoints may result in a drug approval without confirmed efficacy. Moreover, complexity, limited quality and availability of tumor samples may not only introduce bias and result in unreliable and unrepresentative findings, but also can potentially harm patients and assign them to an inappropriate therapy arm. Secondly, we refer to benefits and risks. Novel clinical trials can gain important knowledge on the variety of tumors, which can be used in future trials to develop effective therapies. However, they offer limited direct benefits to patients. All potential participants must wait about 2 weeks for the results of the genetic screening, which may be stressful and produce anxiety. The enrollment of patients whose tumors harbor multiple mutations in treatments matching a single mutation may be controversial. As to informed consent - the third requirement we discuss, the excessive use of phrases like "personalized medicine", "tailored therapy" or "precision oncology" might be misleading and cause personal convictions that the study protocol is designed to fulfill the individual health-related needs of participants.ConclusionsWe suggest that further approaches should be implemented to enhance scientific validity, reduce misunderstandings and risks, thus maximizing the benefits to society and to trial participants.

Dataset Information

Provider-reported challenges and barriers to referring patients to neuro-oncology clinical trials: a report from the Society for Neuro-Oncology member survey.

Publications

Provider-reported challenges and barriers to referring patients to neuro-oncology clinical trials: a report from the Society for Neuro-Oncology member survey.

Similar Datasets

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