Attendance to Hodgkin lymphoma survivorship care clinics in the Netherlands.

Abstract

71 Background: Survivors of Hodgkin lymphoma (HL) are at risk for late adverse effects of treatment. The Dutch BETER consortium, consisting of healthcare providers, researchers and patient representatives, has set up survivorship care clinics where HL survivors are screened for late effects. Methods: In order to assess patient characteristics and clinical attendance rates, descriptive statistics were calculated for data on HL survivors who were invited to attend the BETER clinics in the University Medical Center Utrecht (UMCU) and Erasmus University Medical Center (EMC). Results: Overall 291 survivors were invited to attend one of the two BETER clinics. Median age at invitation was 46 years (interquartile range IQR: 40-55 years), median age at HL diagnosis 29 years (IQR: 22-37 years) and median time since diagnosis 16 years (IQR: 11-22 years). Survivors were referred to the BETER clinic by the general EMC/UMCU outpatient clinics where they were still under surveillance (42%) or invited by phone (37%) or letter (20%). While 79% of survivors responded to the invitation, only 53% of all patients actually visited the BETER clinic. Most common reasons to not attend were: undergoing surveillance or treatment for late effects elsewhere (91%) and unwillingness to attend (8%; e.g. due to financial or emotional burden). Ninety-eight% of survivors who were still under surveillance in EMC/UMCU hospitals attended the BETER clinic, as opposed to only 19% of survivors who were no longer under surveillance. Survivors initially invited by letter were more likely to attend (38%) than those who were first contacted by phone (11%). Age at invitation and age at HL diagnosis were similar in those who did and did not attend. Similar data for another 3 clinics are being collected and will be presented at the ASCO Survivorship Symposium. Conclusions: These preliminary data show that only half of HL survivors who were invited, attended a BETER clinic. Unfortunately, survivors who were no longer under medical surveillance were less likely to attend, especially when first contacted by phone. Future, more detailed, evaluation of (non-)attendance in more BETER clinics may reveal the need for additional implementation measures to improve the BETER survivorship care program.