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.

Authors

Institutions

Publication Details

Journal
EJC Paediatric Oncology
Published
2024-08-30
DOI
https://doi.org/10.1016/j.ejcped.2024.100188
Citations
1
Primary Topic
Economic and Financial Impacts of Cancer
Type
article
Field-Weighted Citation Impact
1.13

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

Cross-border access to early phase clinical trials for children with cancer in the Nordic region

Sierra Alef‐Defoe, Hanne Bækgaard Larsen, Solenne Carof, Britt Pinkowski Tersbøl et al.
1 citations
EJC Paediatric Oncology
Economic and Financial Impacts of Cancer
1.13
article

Cross-border access to early phase clinical trials for children with cancer in the Nordic region

Sierra Alef‐Defoe, Hanne Bækgaard Larsen, Solenne Carof, Britt Pinkowski Tersbøl, Nanna Maria Hammer, Sylvain Besle, Karsten Nysom
article en
1 citations

Abstract

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.

EJC Paediatric OncologyVol. 4
Copenhagen University Hospital (DK), Rigshospitalet (DK), Department of Health Services (US)
Aix-Marseille Université, Børnecancerfonden, Institut de Recherche pour le Développement, Institut National de la Santé et de la Recherche Médicale
Good health and well-being
Openalex Percentile: Top 12%
Economic and Financial Impacts of Cancer
1.13
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.