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.
Eline M.J. Lammers, Berthe M.P. Aleman, Michael Schaapveld, Josée M. Zijlstra, Cécile P.M. Janus, Roel J. de Weijer, Maaike G.A. Schippers, Rinske S. Boersma, Saskia S. Gommers, Mirjam Kappert, Flora E. van Leeuwen, Annelies Nijdam