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.

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.

Clinical trial participation by adolescents and young adults with cancer: A continued cause for concern?

2018 ◽  
Vol 45 (5-6) ◽  
pp. 275-283 ◽  
Author(s):  
Victoria White ◽  
Gemma Skaczkowski ◽  
Antoinette Anazodo ◽  
Helen Bibby ◽  
Wayne Nicholls ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Young Adults ◽  
Adolescents And Young Adults ◽  
Trial Participation ◽  
Clinical Trial Participation

Clinical trial awareness in oncology patients of diverse ethnic background: A single-institution analysis.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19217-e19217
Author(s):  
Gautam Valecha ◽  
Nishitha Thumallapally ◽  
Sandy El Bitar ◽  
Terenig O. Terjanian ◽  
Louise Madrigal ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Clin Oncol ◽  
Tumor Stage ◽  
Trial Participation ◽  
Cancer Clinical Trials ◽  
Single Institution ◽  
Staten Island ◽  
Enrollment Rates ◽  
Zip Code

e19217 Background: Clinical trials offer several advantages to the patients including access to innovative treatments with improved survival rates, closer monitoring and follow-up with removal of health disparity; and aim to advance the science of medicine. Yet, worldwide enrollment rates in cancer clinical trials have been only about 5 percent, despite the fact that a significantly higher percentage of Americans have a desire to participate in clinical trials [1, 2]. We conducted a single institution study to gain knowledge about clinical trial awareness in our cancer patient population as well as to identify the barriers within provider-consumer communication that prevent enrollment. Methods: A 10-question survey was distributed by medical assistants and surveys (n=222) were collected at the end of each clinic visit. Responders included racial/ethnic minorities and underserved patients, representative of the ethnic diversity in the Staten Island Borough of New York City. Demographic data including age, gender, zip code, race and ethnicity were recorded. Additionally, Charlson comorbidity index and tumor stage was also recorded. Results: 159/222 patients (71.62%) completed the survey. Of these patients, 47 (29.55%) answered every question on the survey, while 112/159 patients (70.44%) answered only few of the questions. The completed surveys are linked by zip code to the different boroughs of Staten Island, which allows us to identify hubs with lack of clinical trial awareness knowledge. Conclusions: Despite the several advantages for patients and medical field, enrollment rates in clinical trials remain very low. Our study results help in gaining knowledge about clinical trial awareness among oncology patients, correlated to comorbidity and tumor stage. In addition, demographic hubs with lack of knowledge are identified as targets for community outreach and education. A multilevel approach will be developed to address identified barriers that exist for patients, and will be implemented at community level, to reduce ethnic bias in trial enrollment and increase trial participation among an ethnically diverse population. References: 1. Unger JM, Cook E, Tai E, Bleyer A: The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. Am Soc Clin Oncol Educ Book. 2016, 35:185-198. 10.1200/EDBK_156686 2. Comis RL, Miller JD, Aldigé CR, Krebs L, Stoval E: Public attitudes toward participation in cancer clinical trials. J Clin Oncol. 2003, 21:830-835. 10.1200/JCO.2003.02.105.

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.

scholarly journals Evaluation of Adolescents’ and Young Adults’ Attitudes Toward Participation in Cancer Clinical Trials

2020 ◽  
Vol 16 (3) ◽  
pp. e280-e289
Author(s):  
Jeremy Lewin ◽  
Jennifer A. H. Bell ◽  
Kate Wang ◽  
Victoria Forcina ◽  
Seline Tam ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Young Adults ◽  
Logistic Regression ◽  
Adolescents And Young Adults ◽  
Cancer Clinical Trials ◽  
Patient Centered ◽  
Logistic Regression Models ◽  
Age Related ◽  
Tumor Types

PURPOSE: Participation in cancer clinical trials (CCTs) for adolescents and young adults (AYAs) remains the lowest of any patient group with cancer. Little is known about the personal barriers to AYA accrual. The aim of this study was to explore AYA attitudes that influence CCT participation. METHODS: A mixed-methods approach was used. AYAs and non-AYAs (≥ 40 years) completed the Cancer Treatment subscale of the Attitudes Toward Cancer Trials Scales and 9 supplementary questions formed from interview analysis. Differences between AYA and non-AYA cohorts were analyzed using the Mann-Whitney U test, and logistic regression models were constructed to evaluate the effect of demographics on perceptions of CCTs. RESULTS: Surveys were distributed to 61 AYAs (median age, 29 years; range, 17-39 years) and 74 non-AYAs (median age, 55 years; range, 40-88 years). Compared with non-AYAs, AYAs perceived CCTs to be unsafe/more difficult (Personal Barrier/Safety domain; P = .01). There were no differences based on age in other domains. AYAs were also more concerned with CCT interference in their long-term goals ( P = .04). Multivariable ordered logistic regression identified increased personal barriers in the Personal Barrier/Safety domain for AYAs ( P = .01), in patients with English as a second language (ESL; P < .01), and in patients previously not offered a clinical trial ( P = .03). Long-term goals were identified as a barrier in particular tumor types ( P = .01) and in patients with ESL ( P < .01), with a trend identified in AYAs ( P = .12). CONCLUSION: Age-related differences in attitudes toward CCTs suggest that tailored approaches to CCT accrual are warranted. Patient-centered delivery of information regarding CCTs, particularly in patients with ESL and who are trial naïve, may improve accrual.

scholarly journals Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials

2016 ◽  
Vol 12 (6) ◽  
pp. 556-563 ◽  
Author(s):  
Mona N. Fouad ◽  
Aras Acemgil ◽  
Sejong Bae ◽  
Andres Forero ◽  
Nedra Lisovicz ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
African American ◽  
African Americans ◽  
Patient Navigation ◽  
Comprehensive Cancer Center ◽  
Trial Participation ◽  
Cancer Clinical Trials ◽  
Minority Participation ◽  
Navigation Support

Purpose: Less than 10% of patients enrolled in clinical trials are minorities. The patient navigation model has been used to improve access to medical care but has not been evaluated as a tool to increase the participation of minorities in clinical trials. The Increasing Minority Participation in Clinical Trials project used patient navigators (PNs) to enhance the recruitment of African Americans for and their retention in therapeutic cancer clinical trials in a National Cancer Institute–designated comprehensive cancer center. Methods: Lay individuals were hired and trained to serve as PNs for clinical trials. African American patients potentially eligible for clinical trials were identified through chart review or referrals by clinic nurses, physicians, and social workers. PNs provided two levels of services: education about clinical trials and tailored support for patients who enrolled in clinical trials. Results: Between 2007 and 2014, 424 African American patients with cancer were referred to the Increasing Minority Participation in Clinical Trials project. Of those eligible for a clinical trial (N = 378), 304 (80.4%) enrolled in a trial and 272 (72%) consented to receive patient navigation support. Of those receiving patient navigation support, 74.5% completed the trial, compared with 37.5% of those not receiving patient navigation support. The difference in retention rates between the two groups was statistically significant (P < .001). Participation of African Americans in therapeutic cancer clinical trials increased from 9% to 16%. Conclusion: Patient navigation for clinical trials successfully retained African Americans in therapeutic trials compared with non–patient navigation trial participation. The model holds promise as a strategy to reduce disparities in cancer clinical trial participation. Future studies should evaluate it with racial/ethnic minorities across cancer centers.

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