Attendance to HODGKIN lymphoma survivorship care clinics in the Netherlands

Abstract

Background: Survivors of Hodgkin lymphoma (HL) are at risk for late adverse effects of treatment. The Dutch BETER consortium, consisting of health care providers, researchers, and patient representatives, has set up survivorship care clinics (=BETER clinics), where HL survivors are screened for late effects. Patients eligible for the BETER clinics are: ≥5-year HL survivors, treated for HL after 1965, aged 15-60 years at first HL treatment and current age ≤ 75 years. 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 BETER clinics in the University Medical Center Utrecht (Utrecht), Erasmus MC Cancer Institute (Rotterdam), Radboud University Medical Center (Nijmegen), VU University Medical Center (Amsterdam), and Antoni van Leeuwenhoek hospital (Amsterdam). Results: Overall, 584 survivors were invited to attend one of the 5 BETER clinics. Of those who were invited 80% responded and 57% attended the clinic. Median age at invitation was 49 years (interquartile range [IQR]: 41-57 y), median age at HL diagnosis 27 years (IQR: 22-34 y), and median time since diagnosis 19 years (IQR: 12-26 y). Forty-six percent of HL survivors were still under surveillance at the outpatient clinics of the corresponding center. These patients were transferred to the new BETER clinic where follow-up care is adapted to the new screening guidelines. Most common reasons not to attend were undergoing surveillance or treatment for late effects elsewhere (73%) and unwillingness to attend (19%; eg, due to financial or emotional burden). Survivors who were no longer under surveillance were less likely to attend the BETER clinic. Ninety-four percent of survivors who were still under surveillance attended the BETER clinic, opposed to 30% of survivors who were no longer under surveillance. Survivors initially invited by letter were more likely to attend (43%) than those who were first contacted by phone (37%). Age at invitation and age at HL diagnosis were similar in those who did and did not attend. Conclusions: These preliminary data show that 57% 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 the BETER clinics may reveal the need for additional measures to improve the BETER survivorship care program. Keywords: Hodgkin lymphoma (HL)