By Sophia Smith, PhD, Chair of Hodgkin’s International
During my sabbatical at the Netherlands Cancer Institute (NKI), I have been working closely with investigators affiliated with the BETER program, one of the world’s most comprehensive survivorship initiatives for people treated for Hodgkin lymphoma (HL). BETER (short for Better care after HL) was established to systematically identify, prevent, and manage the long-term and late adverse effects of HL treatment using a risk-based, personalized follow-up approach. Embedded within BETER is the INSIGHT study, a large-scale survivorship cohort that is generating rich data on late effects and patient-reported outcomes.
My role as a visiting scholar at NKI has focused on analyzing INSIGHT data. To date, I have drafted a first manuscript reporting survivors’ knowledge of late adverse effects, and I have begun work on a second manuscript examining how worry about late adverse effects can impact quality of life among HL survivors. This work is closely aligned with the foundational research led by Dr. Flora van Leeuwen, one of the foundational scientific leaders of the BETER program and an internationally respected survivorship researcher, as well as her long-time collaboration with Dr. Kevin Oeffinger, a global leader in cancer survivorship and a valued colleague of mine. Dr. Oeffinger helped facilitate my sabbatical at NKI, making this cross-national collaboration possible. Together, this work highlights how data embedded within clinical survivorship programs like BETER can directly inform research, advocacy, and improved long-term care for survivors, a priority that strongly resonates with Hodgkin International’s mission.
Learn more about the BETER program at: https://www.beternahodgkin.nl/