Abstract
Background
Disease-specific studies on the impact of Hodgkin lymphoma (HL) on education or work interruption and resumption are lacking.
Material and methods
In a cross-sectional study conducted among long-term HL survivors enrolled from 1964 to 2004 in nine randomised EORTC-LYSA trials, the interruption and resumption of education/work was investigated. Survivors alive 5–44 years after diagnosis who were studying or working at time of diagnosis were included (n = 1646). Patient and treatment characteristics were obtained from trial records. Education and work outcomes were collected using the Life Situation Questionnaire. Logistic regression was used to model education or work interruption; Cox regression was used to study resumption rates.
Results
Among survivors studying at time of diagnosis (n = 323), 52% (95% CI: 46–57%) interrupted their education; however, it was resumed within 24 months by 92% (95% CI: 87–96%). The probability of interruption decreased with time: the more recent the treatment era, the lower the risk (OR 0.70 per 10 years, 95% CI: 0.49–1.01). Treatment with radiotherapy (yes vs. no) was associated with a higher education resumption rate (HR 2.01, 95% CI 1.07–3.78) whereas age, sex, stage, radiotherapy field and chemotherapy were not.
Among survivors working at time of diagnosis (n = 1323), 77% (95% CI: 75–79%) interrupted their work. However, it was resumed within 24 months by 86% (95% CI: 84%-88%). Women were more likely to interrupt their work as compared to men (OR 1.90, 95% CI: 1.44–2.51) and, when interrupted, less likely to resume work (HR 0.70, 95% CI: 0.61–0.80). Survivors with a higher educational level were less likely to interrupt their work (OR 0.68 for university vs. no high school, 95% CI: 0.46–1.03); and when interrupted, more likely to resume work (HR 1.50 for university vs. no high school, 95% CI: 1.21–1.86). Increasing age was also associated with lower resumption rates (HR 0.62 for age ≥50 vs. 18–29 years, 95% CI: 0.41–0.94).
Conclusion
An interruption in education/work was common among long-term HL survivors. However, most of the survivors who interrupted their studies or work had resumed their activities within 24 months. In this study, no associations between survivors’ characteristics and failure to resume education were observed. Female sex, age ≥50 years, and a lower level of education were found to be associated with not resuming work after treatment for HL.
Ethical approval
This study is exclusively register-based. All data are anonymized. In Denmark, register-based research (that does not include biological material) does not need to be notified to the scientific ethics committee system. Protocols and informed consent for the H1–H9 trials as well as the LSQ cross-sectional study was approved by local ethical committees in each participating country. The studies were conducted in accordance with the Helsinki Declaration. Participants who received the Life Situation Questionnaire have all consented to their responses being analysed.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
Access to the data that support the findings of this study (request form) is available at https://www.eortc.org/data-sharing/. All data sharing takes place in accordance with EORTC’s data sharing policy.