Teenagers and young adults with cancer need better access to clinical trials

BMJ ◽  
2013 ◽  
Vol 346 (mar25 1) ◽  
pp. f1959-f1959 ◽  
Author(s):  
Z. Kmietowicz
Keyword(s):  
Clinical Trials ◽  
Young Adults ◽  
Teenagers And Young Adults

scholarly journals Clinician–researchers and custodians of scarce resources: a qualitative study of health professionals’ views on barriers to the involvement of teenagers and young adults in cancer trials

Trials ◽  
2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Ruth I. Hart ◽  
Nina Hallowell ◽  
Jeni Harden ◽  
Angela B. Jesudason ◽  
Julia Lawton
Keyword(s):  
Clinical Trials ◽  
Young Adults ◽  
Role Conflict ◽  
Direct Care ◽  
Optimal Care ◽  
Scarce Resources ◽  
Number Of Patients ◽  
Teenagers And Young Adults ◽  
Low Levels ◽  
Cancer Trials

Abstract Background Equipoise and role conflict have been previously identified as important factors in professionals’ engagement with trials, inducing behaviours which can impact on recruitment. We explored these phenomena as potential explanations for the low levels of involvement of teenagers and young adults (TYA) with cancer in clinical trials in oncology. Methods We report findings from interviews with 30 purposively sampled direct-care professionals involved in delivering cancer care and/or facilitating clinical trials in Scotland. We undertook qualitative descriptive analysis, focussed on identifying key issues and themes. Results Interviewees largely identified as clinician–researchers and portrayed oncology as a specialty in which research was integral to care. They saw their primary responsibility as ensuring patients received the best treatment, but asserted that, in general, trials provided a vehicle for optimal care. Role conflict in its traditional form was rarely evident; however, other tensions were manifest. Professionals found the significant time costs of delivering trials difficult to reconcile with the increasing pressures on clinical services. They felt a responsibility to make prudent choices about the trials with which to engage. Guided by utilitarian principles, these choices were oriented towards benefiting the largest number of patients. This favoured trials in high volume diseases; as TYA tend to have rarer forms of cancer, professionals’ support for—and TYA’s access to—relevant trials was, by default, more limited. Conclusions Neither lack of individual equipoise nor experiences of traditional forms of role conflict accounted for the low levels of involvement of TYA with cancer in clinical trials. However, prominent tensions around the management of scarce resources provided an alternative explanation for TYA’s limited access to cancer trials. The prevailing approach to decision-making about whether and which trials to support was recognised as contributing to inequalities in access and care. Professionals’ choices, however, were made in the context of scarcity, and structured by incentives and sanctions understood by them as signalling governmental priorities. A franker discussion of the extent and distribution of the costs and benefits of trials work is needed, for change to be achieved.

805-P: Barriers and Facilitators of Participation in Clinical Trials among Youth and Young Adults with Type 1 Diabetes and Their Caregivers

Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 805-P
Author(s):  
SARAH C. WESTEN ◽  
LINDSAY M. ANDERSON ◽  
SAMANTHA A. BARRY ◽  
SYDNEY LOOK ◽  
STEFANIA PINTO ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Type 1 Diabetes ◽  
Young Adults ◽  
Barriers And Facilitators ◽  
Youth And Young Adults
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