TY - JOUR
T1 - Cross-border access to early phase clinical trials for children with cancer in the Nordic region
AU - Alef-Defoe, Sierra
AU - Carof, Solenne
AU - Hammer, Nanna Maria
AU - Besle, Sylvain
AU - Larsen, Hanne Baekgaard
AU - Tersbøl, Britt Pinkowski
AU - Nysom, Karsten
N1 - Publisher Copyright:
© 2024
PY - 2024/12
Y1 - 2024/12
N2 - 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.
AB - 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.
KW - clinical trial
KW - cultural capital
KW - pediatric oncology
KW - socioeconomic factors
UR - http://www.scopus.com/inward/record.url?scp=85203024602&partnerID=8YFLogxK
U2 - 10.1016/j.ejcped.2024.100188
DO - 10.1016/j.ejcped.2024.100188
M3 - Journal article
AN - SCOPUS:85203024602
SN - 2772-610X
VL - 4
JO - EJC Paediatric Oncology
JF - EJC Paediatric Oncology
M1 - 100188
ER -