Background: Survivors of Hodgkin lymphoma (HL) are at increased risk of various late adverse effects of treatment, leading to substantial excess morbidity and mortality. The Dutch BETER consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) aims at improving life expectancy and quality of life for HL survivors.
Methods: The BETER consortium has developed: (1) evidence-based follow-up guidelines for HL survivors according to (inter)national standards; (2) a nationwide infrastructure for survivorship care clinics in which risk-based care is provided to ≥5-year survivors of HL, who were treated after 1965 at ages 15-60 years. Moreover, the BETER consortium aims at improving knowledge about late adverse effects of HL treatment in patients as well as health care providers, e.g. through the website www.beternahodgkin.nl.
Results: BETER-guidelines for second malignancies, cardiovascular disease, thyroid disease, osteoporosis and fertility, functional asplenia, neck muscle weakness and other problems (quality of life, weight, dental health, neurological problems, and pulmonary disease) are expected to be approved soon by the respective medical societies. Currently, 11 out of 23 centres participating in the BETER consortium have established a BETER Survivorship Care Clinic. Other centres are planning to start shortly. The proportion of HL survivors still under medical surveillance varied substantially across BETER clinics. For these patients follow-up care is adapted to the new screening guidelines. Among the HL survivors who were discharged from follow-up care, there was a large variation in attendance rate between BETER clinics, varying from 25% to 90%. Five to 35% of patients did not respond to the invitation and 5 to 40% did not wish to attend. Most common reasons to not attend were: undergoing screening or treatment for late effects elsewhere, not wanting to be reminded of HL, emotional burden and financial reasons. We will evaluate reasons for non-attendance in more detail in the near future.
Conclusion: Clinical attendance rates of HL survivors who were previously discharged from follow-up, vary substantially between BETER clinics. Evaluation of reasons for non-attendance will be used to improve survivorship care.