A Dutch nationwide survivorship care program for Hodgkin lymphoma survivors

6 Background: Survivors of Hodgkin lymphoma (HL) are at increased risk of various late adverse effects of treatment, leading to substantial excess morbidity and mortality. Long-term follow-up care programs have been established for childhood cancer survivors, but not yet for HL survivors. The Dutch BETER consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) has developed a nationwide infrastructure for Survivorship Care Clinics for HL survivors. The consortium aims to: 1) establish follow-up guidelines for survivors; 2) identify survivors eligible for follow-up care; 3) educate survivors about late adverse treatment effects; and 4) provide risk-based care. Methods: Evidence-based follow-up guidelines were developed according to international standards. The guideline development group consisted of clinicians, methodological experts and patient representatives. To be eligible for follow-up care patients must have survived ≥ 5 yrs and have been treated at ages 15-70 years after 1969. Survivors were identified through the Netherlands Cancer Registry and hospital-based registries. Tracing of current addresses was done through the nationwide database of Municipal Offices. Results: We developed guidelines forsecond malignancies, cardiovascular disease, thyroid disease, osteoporosis and functional asplenia infection prophylaxis. Recommendations are given for fertility care and therapy for neck muscle weakness. We have identified and traced a cohort of 12,000 HL survivors in 23 centers, covering about 80% of HL patients in the Netherlands, of whom 8,500 appear to be eligible for follow-up care. For all survivors, treatment data were collected from the medical records to provide risk-based screening recommendations. A website and a survivorship care plan were developed to educate survivors about late effects. A nationwide database, including screening and adverse events data, is in development to evaluate the follow-up guidelines for diagnostic value and efficacy. Conclusions: We expect that the BETER project will improve healthy life expectancy of HL survivors. Evaluation of follow-up care will lead to a more evidence-based follow-up program.