Introduction: Participation rates in cancer survivorship programmes are suboptimal and reasons for non-attendance are poorly understood. We aimed to: 1) identify survivor and treatment characteristics associated with (non-)attendance at Dutch survivorship care clinics for Hodgkin lymphoma (HL) survivors (BETER clinics) and 2) evaluate survivor-reported reasons for non-attendance.
Methods: We assessed attendance rates at seven BETER clinics for 5-year HL survivors (n=485) in 2013-2023. The association between sex, socio-economic status (based on zip code), age at invitation, time since HL diagnosis and treatment intensity (high: chemotherapy plus supradiaphragmatic radiotherapy, intermediate: supradiaphragmatic radiotherapy only, low: chemotherapy with subdiaphragmal radiotherapy or without radiotherapy) and non-attendance was assessed in multivariable logistic regression analysis, including a random effect for hospital. Backward selection was performed based on Akaike Information Criterion. Reasons for non-attendance were retrieved from a survey sent to all non-attenders.
Results: Seventy-two % of survivors (n=350) attended the clinic, 28% (n=135) did not (Table 1). Non-attenders were more often male (55% male vs 41% of attenders), were older at invitation (median 50 years vs 47 years among attenders) and had a longer time interval since diagnosis at invitation (median 22 years vs 19 years among attenders). Treatment intensity was similar (non-attenders: high 65%, intermediate 18% and low 17%, attenders: high 65%, intermediate 16%, and low 19%), as well as socio-economic status score. In multivariable analysis, signification associations with non-attendance were found for male sex (OR 2.15 [95% CI 1.35-3.43]) and longer time since diagnosis (OR 1.04 [95% CI 1.02-1.07]). Of all non-attenders, 28% (n=39, 46% male) responded to the survey. They reported the following reasons for non-attendance: surveillance or treatment for late adverse effects outside of the BETER programme (41%), emotional burden of clinic visit (33%), insufficient time (10%), clinic too far away (13%), screened deemed not necessary (5%), could not remember the invitation or changed their mind and (now) open to visit a BETER clinic (39%) (multiple reasons per survivor possible).
Conclusion: Our findings inform attempts to improve attendance rates at Dutch survivorship clinics for HL survivors. Active involvement of (male) survivors could help to further identify barriers for attendance.