Usher Institute, University of Edinburgh, Edinburgh, UK.
Edinburgh Cancer Centre, Western General Hospital, Edinburgh, UK.
Eur J Cancer Care (Engl). 2021 May;30(3):e13408. doi: 10.1111/ecc.13408. Epub 2021 Jan 20.
Few teenagers and young adults (TYA) with cancer participate in clinical trials. Lack of opportunity has been identified as a major barrier. We canvassed health professionals' views on how TYA's access to trials might be improved.
We interviewed 35 professionals with responsibility for delivering or facilitating cancer care and/or clinical trials. We analysed data using a qualitative descriptive approach.
Interviewees viewed improving TYA's access to trials as challenging, but possible. They reframed the problem as one of rare disease and surmised that modifying the organisation, administration and resourcing of research (and care) might expand opportunities for both TYA and other patients with low volume conditions. Proposals coalesced around four themes: consolidating the pool of patients; streamlining bureaucratic requirements; investing in the research workforce; and promoting pragmatism in trial design.
Accounts suggest there is scope to improve access to trials by TYA with cancer and other patients with rare diseases. Though re-configuring care, research and resource frameworks would present substantial challenges, doing nothing would also have costs. Change will require the support of a range of stakeholders, and agreement as to the best way forward. Further work, such as priority setting exercises, may be necessary to reach a consensus.
很少有青少年和年轻人（TYA）患有癌症参与临床试验。缺乏机会被认为是一个主要的障碍。我们征求了卫生专业人员的意见，了解如何改善 TYA 参与试验的机会。
我们采访了 35 名负责提供或促进癌症护理和/或临床试验的专业人员。我们使用定性描述方法分析数据。
受访者认为改善 TYA 参与试验具有挑战性，但并非不可能。他们将问题重新定义为罕见疾病问题，并推测修改研究（和护理）的组织、管理和资源分配可能会为 TYA 和其他患有低容量疾病的患者扩大机会。建议围绕四个主题集中：合并患者群体；简化官僚要求；投资于研究人员队伍；并在试验设计中推广务实主义。
有报道称，有改善癌症和其他罕见疾病 TYA 参与试验的机会。虽然重新配置护理、研究和资源框架将带来巨大的挑战，但不作为也会带来成本。变革将需要一系列利益相关者的支持，并就前进的最佳方式达成一致。可能需要进一步的工作，如优先事项设定练习，以达成共识。
