Strategies to enhance pediatric clinical trial participation: A systematic review with narrative synthesis

2021 ◽  
Author(s):  
Paige Leigh McKenzie ◽  
Dawn H. Siegel ◽  
Danielle Cullen ◽  
Leslie Castelo‐Soccio
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Trial Participation ◽  
Narrative Synthesis ◽  
Clinical Trial Participation ◽  
Pediatric Clinical Trial

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 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.

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