Survivorship care for lymphoma survivors

At NKI we are coordinating the development of a nationwide survivorship care program for lymphoma survivors. A consortium of dedicated hemato-oncologists and radiation oncologists of 22 University Medical Centers and peripheral hospitals has been established, the BETER consortium (Better care after Lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations). The ultimate goal of the survivorship care program is to improve life expectancy and quality of life of (N)HL survivors by reducing morbidity from late treatment effects. National evidence-based follow-up guidelines for HL survivors have been developed. So far, already four BETER survivorship clinics have started. Several features were developed to support these clinics, including patient questionnaires, survivorship care plans and medical assessment forms for healthcare providers. So far, 8,400 5-year HL survivors and 2,800 NHL survivors (only diffuse large B-cell lymphoma) have been identified. We expect that 60-65% of them is still alive and eligible for the BETER survivorship clinics. Collection of lymphoma treatment data is ongoing for all (N)HL survivors, to allow risk-based screening, and will continue with data collected during the visits to the BETER survivorship clinics. These data will be combined in a national database to facilitate evaluation of the BETER survivorship care program as well as research. When survivors visit the survivorship clinics, they are informed about their specific risks following treatment and receive risk-based screening recommendations, summarized in a survivorship care plan. Furthermore, together with the Lymphoma Patient Association we developed a special website about HL late effects: www.beternahodgkin.nl.