2134P - Self-reported late effects, need for information and follow-up in long-term Hodgkin lymphoma survivors

Background

Hodgkin’s lymphoma survivors (HLSs) are at risk for late effects due to their early age at diagnosis, multimodal therapy and long life expectancy. Among HLSs, we explored self-reported late effects, and assessed their information needs regarding lifestyle (diet and physical activity) and rehabilitation, in addition to need for long-term follow-up and factors associated with these needs.

Methods

HLSs treated 1997-2006 and aged 18-49 years at diagnosis were identified by the Norwegian Cancer Registry and invited to participate in this population-based, cross-sectional study consisting of a questionnaire, blood tests, clinical examination and echocardiography. Information regarding histology, stage and treatment was retrieved from medical records. Descriptive statistics and logistic regression models were used.

Results

Among the participants (n=304, 59% response rate), median age at diagnosis was 29 years (range 8-49), median age at survey 45 years (21-70), median observation time 16 years (10-22) and 48 % were females. Ninety percent had classical HL, 62% had stage I-IIA disease, 94% received chemotherapy and 77% radiotherapy. Seventy-four percent reported to have experienced ≥1 late effects; concentration/memory problems (29%), numbness/nerve pain (32%) and dental problems (27%) were the most common. Forty-one percent reported chronic fatigue (CF). One third reported to have received follow-up for late effects. A total of 64% wanted information about lifestyle and/or rehabilitation, and 58% wanted regularly follow-up for late effects. In the multivariable models, CF (OR 2.2, 95%CI 1.2-4.1), short education (2.2, 1.2-4.0), being physical inactive (2.0, 1.1-3.5) were associated with increased likelihood of need for information about lifestyle and/or rehabilitation. CF was associated with increased likelihood of need for follow-up for late effects (2.1, 1.3-3.6).

Conclusions

HLSs report a high level of late effects and only a small proportion receive follow-up for these problems. Chronic fatigue is associated with need for information and follow-up, indicating that these patients could benefit from a more structured model for long-term follow-up than what is currently available.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Oslo University Hospital.

Funding

Norwegian Cancer Society and the DAM foundation, project number 2019/FO247426; Norwegian Extra Foundation for Health and Rehabilitation.

Disclosure

All authors have declared no conflicts of interest.