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

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.

Strategies for improving access to clinical trials by teenagers and young adults with cancer: A qualitative study of health professionals’ views

“…Interviewees highlighted the diverse cast of people involved in setting up and delivering cancer trials: clinician‐investigators, pharmacists, radiographers, pathologists, research support staff (nurses and data managers) and R&D staff. Interviewees perceived all these groups as working under considerable and often competing pressures, with these constraining professionals’ engagement with trials in general, and TYA‐relevant (rare disease) trials in particular (Hart et al, 2020). Interviewees suggested four ways in which investment in the research workforce might directly or indirectly facilitate the delivery of, and TYA’s access to, relevant trials.…”

“…Moreover, where the trial‐eligible population is small and recruitment therefore predicted to be (s)low, sponsors may seek to open trials only at the very largest centres. Local decision‐making may further affect opportunities, with clinicians prioritising engagement with trials in higher volume diseases (Hart et al, 2020). Hence, even when relevant trials are established, they may be opened only at a limited number of centres and TYA’s access may depend substantially upon where they receive care (Fern et al, 2014; Fern & Taylor, 2018; Hart et al, 2020).…”

Feasibility and design of a trial regarding the optimal mode of delivery for preterm birth: the CASSAVA multiple methods study

“…[30][31][32] Qualitative research has also highlighted how more pragmatic resource-related concerns (shortfalls) may undermine even committed health-care professionals' support for trials. 33 Research involving patients has provided further insight into the barriers to and facilitators of trial recruitment more generally and in particular specialisms/areas. [34][35][36] Given the potential challenges of recruiting into a trial of MoB in PTB, and to help inform decisions about whether or not such a trial should go ahead in the future, our qualitative study sought to address the following aims.…”