JMIR Publications

ABSTRACT

Background:

Cancer during pregnancy is a significant life-changing event affecting not only mothers but also their exposed children and families. Thanks to advancements in knowledge regarding safe treatment options, supported by the International Network on Cancer Infertility and Pregnancy (INCIP), currently less pregnancies are being terminated and consequently, the number of living children exposed to cancer treatments in utero is increasing. However, long-term side effects including physical, neuromotor, neurocognitive and psychosocial impacts on offspring and their families after delivery are still being assessed.

Objective:

Given the importance of expertise in assessing the health of children born to mothers with cancer during pregnancy to identify long-term effects, a national centralized Cancer in Pregnancy offspring follow-up outpatient clinic was established. The objective of this initiative is to monitor long-term effects and provide structured surveillance for these children and their families.

Methods:

This outpatient clinic, located at the Princess Máxima Center in the Netherlands, was established in 2018. This clinic offers standardized surveillance from birth to the age of 18 years for all Dutch in utero exposed children and their families at predefined moments. It prioritizes surveillance follow-up as standard of care while integrating research initiatives. The clinic's multidisciplinary team, including two pediatric oncologists, two pediatric physiotherapists and a pediatric psychological expert, ensures comprehensive surveillance care and family support.

Results:

Since its establishment, the clinic has registered 226 unique exposed children, predominantly from mothers with breast, gynecological, and hematological cancers. A special challenge includes the 14% of families of which the mothers have passed away from cancer. The expert team serves on the international Advisory Board for Cancer in Pregnancy (ABCIP), which advises physicians treating individual pregnant women with cancer.

Conclusions:

The establishment of this national centralized Cancer in Pregnancy offspring clinic provides a unique and structured approach to long-term follow-up care for in utero exposed children. By sharing knowledge and experiences from the unique setting of this national centralized Cancer in Pregnancy offspring outpatient clinic, this manuscript aims to guide interested countries in developing similar translational facilities to support affected families and improve care worldwide.