Barriers to Pediatric Oncologist Enrollment of Adolescents and Young Adults on a Cross-Network National Clinical Trials Network Supportive Care Cancer Clinical Trial

2021 ◽  
Author(s):  
Nupur Mittal ◽  
Anne-Marie Langevin ◽  
Wade Kyono ◽  
David S. Dickens ◽  
Allison Grimes ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Young Adults ◽  
Supportive Care ◽  
Cancer Clinical Trial ◽  
Adolescents And Young Adults ◽  
Pediatric Oncologist

scholarly journals Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial

Children ◽  
2019 ◽  
Vol 6 (11) ◽  
pp. 117 ◽  
Author(s):  
Abby R. Rosenberg ◽  
Courtney C. Junkins ◽  
Nicole Sherr ◽  
Samantha Scott ◽  
Victoria Klein ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Young Adults ◽  
Psychosocial Intervention ◽  
Adolescents And Young Adults ◽  
Limited Participation ◽  
Study Staff ◽  
Content Analyses ◽  
Trial Testing ◽  
Field Notes

Background: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies learned during the trial’s conduct. Methods: We summarized data from the medical record and staff field notes regarding reasons for participation/non-participation. We conducted two focus groups with study staff; directed content analyses identified strategies for success. Results: 92 AYAs enrolled (77% of approached; n = 50 Usual Care (control), n = 49 PRISM (intervention)). In eligible families who declined participation (n = 22 AYAs, n = 8 parents), the AYAs more commonly had advanced cancer (n = 11 (37%) declined vs. n = 25 (26%) enrolled). AYA reasons for non-enrollment were predominantly “not interested”; parents worried participation was “too burdensome.” Staff strategies for accrual included having significant time to introduce the study and underscoring a desire to learn from the patient. After enrollment, AYAs who discontinued participation were more commonly assigned to control (n = 5 (10%) control vs. n = 2 (4%) intervention). Only n = 1 AYA chose to discontinue participation after receiving the intervention. Conclusions: Efforts to engage AYAs prior to and during studies may help with accrual and retention.

Use of Communication Technology to Improve Clinical Trial Participation in Adolescents and Young Adults With Cancer: Consensus Statement From the Children's Oncology Group Adolescent and Young Adult Responsible Investigator Network

2021 ◽  
Author(s):  
Viswatej Avutu ◽  
Varun Monga ◽  
Nupur Mittal ◽  
Aniket Saha ◽  
Jeffrey R. Andolina ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Young Adults ◽  
Consensus Statement ◽  
Adolescents And Young Adults ◽  
Trial Participation ◽  
Cancer Clinical Trials ◽  
Oncology Group ◽  
Tumor Boards ◽  
Remote Patient

Adolescents and young adults (AYAs; age 15-39 years) with cancer are under-represented in cancer clinical trials because of patient, provider, and institutional barriers. Health care technology is increasingly available to and highly used among AYAs and has the potential to improve cancer care delivery. The COVID-19 pandemic forced institutions to rapidly adopt novel approaches for enrollment and monitoring of patients on cancer clinical trials, many of which have the potential for improving AYA trial participation overall. This consensus statement from the Children's Oncology Group AYA Oncology Discipline Committee reviews opportunities to use technology to optimize AYA trial enrollment and study conduct, as well as considerations for widespread implementation of these practices. The use of remote patient eligibility screening, electronic informed consent, virtual tumor boards, remote study visits, and remote patient monitoring are recommended to increase AYA access to trials and decrease the burden of participation. Widespread adoption of these strategies will require new policies focusing on reimbursement for telehealth, license portability, facile communication between electronic health record systems and advanced safeguards to maintain patient privacy and security. Studies are needed to determine optimal approaches to further incorporate technology at every stage of the clinical trial process, from enrollment through study completion.

Palliative care consultation for patients enrolled in cancer clinical trials.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 139-139
Author(s):  
Ryan David Nipp ◽  
Elizabeth Powell ◽  
Beverly Moy
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Clinical Trials ◽  
Supportive Care ◽  
Somatic Mutation ◽  
Metastatic Disease ◽  
Cancer Clinical Trial ◽  
Cancer Clinical Trials ◽  
Appropriate Use ◽  
Factors Associated

139 Background: Cancer clinical trials often enroll patients with advanced cancer, yet trial participation should not preclude the appropriate use of palliative care (PC) services for these patients. We sought to describe rates and correlates of PC consultation in clinical trial patients and identify factors associated with use of PC. Methods: We prospectively collected data on patient characteristics and rates of PC consultation among all patients enrolled in cancer clinical trials at Massachusetts General Hospital in 2014. We used multiple logistic regression with purposeful selection of covariates to identify factors associated with PC consultation. Results: Of 1,218 clinical trial patients (mean age = 58 years; 643 (53%) female), 781 (64%) were married and 851 (70%) had metastatic disease. All cancer types were represented, but hematologic cancers (21%) were most common. Of those who had tumor genotype testing, 340 (62%) had a somatic mutation. Overall, 177 (15%) received PC consultation. Of those with metastatic disease, 149 (18%) received a PC consult. Metastatic disease, being unmarried, and absence of a somatic tumor mutation correlated with receipt of a PC consult. Conclusions: We found that a minority of cancer clinical trial patients receive PC consultation. Having metastatic disease and being unmarried correlated with receipt of PC consultation, thus highlighting a population likely needing additional supportive care. Presence of a somatic mutation was inversely associated with receiving PC consultation, suggesting that disease biology may impact patients’ supportive care needs or presence of these mutations influences clinician decisions about the need for PC services. These data help identify the factors associated with appropriate use of PC, and add to our understanding about the use of these services in cancer clinical trial patients. [Table: see text]

Systems-Level Change to Alleviate Barriers to Cancer Clinical Trial Access for Adolescents and Young Adults in Australia

2021 ◽  
Author(s):  
Justine A. Ellis ◽  
Vajiranee S. Malalasekera ◽  
Christie Allan ◽  
Peter F. Choong ◽  
Jordan R. Hansford ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Young Adults ◽  
Cancer Clinical Trial ◽  
Adolescents And Young Adults ◽  
Level Change

scholarly journals The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care

Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2675
Author(s):  
Pandora Patterson ◽  
Kimberley R. Allison ◽  
Helen Bibby ◽  
Kate Thompson ◽  
Jeremy Lewin ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Young Adults ◽  
Cancer Care ◽  
Young Patients ◽  
Adolescents And Young Adults ◽  
Adolescent And Young Adult ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Activity Data ◽  
Cancer Services

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Practical Aspects of Implementing and Applying Health Care Cloud Computing Services and Informatics to Cancer Clinical Trial Data

2021 ◽  
pp. 826-832
Author(s):  
Jay G. Ronquillo ◽  
William T. Lester
Keyword(s):  
Health Care ◽  
Clinical Trial ◽  
Cancer Research ◽  
Cloud Computing ◽  
Clinical Trials ◽  
Laboratory Tests ◽  
Cancer Clinical Trial ◽  
Cancer Clinical Trials ◽  
Precision Oncology ◽  
Oncology Research

PURPOSE Cloud computing has led to dramatic growth in the volume, variety, and velocity of cancer data. However, cloud platforms and services present new challenges for cancer research, particularly in understanding the practical tradeoffs between cloud performance, cost, and complexity. The goal of this study was to describe the practical challenges when using a cloud-based service to improve the cancer clinical trial matching process. METHODS We collected information for all interventional cancer clinical trials from ClinicalTrials.gov and used the Google Cloud Healthcare Natural Language Application Programming Interface (API) to analyze clinical trial Title and Eligibility Criteria text. An informatics pipeline leveraging interoperability standards summarized the distribution of cancer clinical trials, genes, laboratory tests, and medications extracted from cloud-based entity analysis. RESULTS There were a total of 38,851 cancer-related clinical trials found in this study, with the distribution of cancer categories extracted from Title text significantly different than in ClinicalTrials.gov ( P < .001). Cloud-based entity analysis of clinical trial criteria identified a total of 949 genes, 1,782 laboratory tests, 2,086 medications, and 4,902 National Cancer Institute Thesaurus terms, with estimated detection accuracies ranging from 12.8% to 89.9%. A total of 77,702 API calls processed an estimated 167,179 text records, which took a total of 1,979 processing-minutes (33.0 processing-hours), or approximately 1.5 seconds per API call. CONCLUSION Current general-purpose cloud health care tools—like the Google service in this study—should not be used for automated clinical trial matching unless they can perform effective extraction and classification of the clinical, genetic, and medication concepts central to precision oncology research. A strong understanding of the practical aspects of cloud computing will help researchers effectively navigate the vast data ecosystems in cancer research.

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