Evaluation of nationwide long-term follow-up care for lymphoma survivors in the Netherlands

Hodgkin lymphoma is a highly curable malignancy that occurs at young ages. However, cured lymphoma survivors are at substantially increased risk of serious late complications of treatment, which may emerge from 5 years onwards. Common late effects include second malignancies, cardiovascular diseases, thyroid dysfunction, reduced fertility, premature menopause and fatigue.

In 2009 the Dutch BETER Consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) was established with the aim to reduce morbidity and mortality from late effects in lymphoma survivors. Therefore, a nationwide infrastructure of outpatient clinics was set up, where survivors are screened and treated for adverse effects of lymphoma treatment according to nationally approved BETER screening guidelines.

ZonMw sponsors the BETER health care evaluation project through the ZE&GG (Zorgevaluatie en Gepast Gebruik) programme. This project aims to examine whether survivorship care at the BETER clinics is (cost-)effective in reducing morbidity and mortality from late effects of Hodgkin lymphoma treatment and associated costs, and whether it will increase health-related quality of life and decrease health-related productivity losses. We will also assess adherence to screening guidelines, attendance rates (including reasons not to attend) and assess whether BETER care increases knowledge about late adverse effects and affects risk perception of and distress about late effects.