北欧地区儿童癌症早期临床试验的跨境准入问题

Sierra Alef-Defoe , Solenne Carof , Nanna Maria Hammer , Sylvain Besle , Hanne Baekgaard Larsen , Britt Pinkowski Tersbøl , Karsten Nysom
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引用次数: 0

摘要

导言:目前仍有 15% 的儿童癌症无法治愈,因此早期临床试验对于开发更好的儿童癌症疗法至关重要。但要获得相关试验的机会却很困难,而越来越多的专业治疗方法并非在每个国家都能获得,这就更加剧了这一问题。哥本哈根是北欧地区主要的儿童癌症早期试验中心,约有一半的试验参与者来自国外。我们探讨了促进跨境参加哥本哈根儿童癌症早期试验的因素。方法和材料我们对来自五个家庭的 11 名家庭成员和 19 名医疗服务提供者进行了访谈,内容涉及旅行参加试验的社会文化方面。结果确定了三大主题:与试验中心的距离、转诊和物流的便利性以及家庭和医疗服务提供者的看法。地理位置的接近和社会文化的接近都为获得试验提供了便利。服务提供者网络为转介提供了便利,赞助商支付了旅费,提高了家庭的可行性。最后,家庭的希望感和医疗服务提供者对试验疗法的积极看法也促进了早期阶段试验的获得。结论我们的研究结果强调了全力支持家庭克服与前往临床试验相关的后勤、费用和挑战的重要性,强大的医疗服务提供者网络在促进转诊方面的价值,以及在转诊患者时需要意识到潜在的社会文化偏见。虽然地理位置和态度等因素也会影响临床试验的获得,但通过为家庭提供全面支持,可以克服许多障碍,从而提高儿童癌症患者获得早期临床试验的机会。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Cross-border access to early phase clinical trials for children with cancer in the Nordic region

Introduction

As 15 % of childhood cancers are still incurable, early phase clinical trials are essential in developing better therapies for children with cancer. Accessing relevant trials can be challenging, exacerbated by increasingly specialized therapies which are not available in every country. Copenhagen houses the main early phase trial center for children with cancer in the Nordic region, with about half of trial participants coming from abroad. We explored factors facilitating cross-border access to early phase pediatric cancer trials in Copenhagen.

Methods and materials

Interviews were conducted with 11 family members from five families and nineteen healthcare providers on socio-cultural aspects of traveling for the trial. A thematic analysis was conducted.

Results

Three major themes were identified: proximity to a trial center, facilitation of referral and logistics, and families’ and providers’ perceptions. Both geographic proximity and socio-cultural proximity facilitated access. Provider networks facilitated referrals and sponsors paid for travel, improving feasibility for families. Finally, families’ feelings of hope and providers’ positive perceptions of experimental therapy also promoted access to early phase trials.

Conclusions

Our findings highlight the importance of fully supporting families through logistics, expenses, and challenges associated with traveling to a clinical trial, the value of robust provider networks in facilitating referrals, and the need for awareness of potential socio-cultural bias in referring patients. While factors like geography and attitude also mitigate access, many barriers can be overcome by comprehensive support for families, improving access to early phase trials for children with cancer.

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