Survivors’ perspectives on risks and benefits of Hodgkin lymphoma treatment: results of a survey by the German Hodgkin Study Group

Abstract

We performed a survey in Hodgkin lymphoma survivors to learn more about their perspectives on treatment risks and benefits. We sent questions to 1149 survivors from the GHSG’s HD13-15 trials with (N = 249) or without (N =900) documented progression or relapse. The participation rate was 52% (N =581). After median follow-up of 106 months, 40% of relapse-free and over 60% of relapsed survivors were still worried about late effects and the possibility of relapse. Chemotherapy, largely independent of its intensity, had been a strain on 74% of relapse-free and 90% of relapsed survivors. Most physical, psychological, and socio-economic sequelae were more frequent among relapsed survivors (p < .05) and described as very burdensome. 74% of relapse-free and 61% of relapsed survivors considered primary cure from Hodgkin lymphoma as the most important aspect in the choice of treatment. Accordingly, primary optimal lymphoma control is of utmost importance from the patients’ perspective.

Keywords:

• Lymphoma and Hodgkin disease
• chemotherapeutic approaches
• radiation

Acknowledgements

The HD13-15 trials were supported by a grant of the Deutsche Krebshilfe e.V. The funders had no role in study design, data collection, data analysis, data interpretation, or writing of the report. All authors had full access to all the data and the corresponding author had final responsibility for the decision to submit for publication.

We thank our colleagues from the GHSG and all patients and survivors for their great and continuous support. In particular, we thank the participants of the presented survey for helping us to better understand the survivors’ needs and worries.

Potential conflict of interest

Disclosure forms provided by the authors are available with the full text of this article online at http://doi.org/10.1080/10428194.2018.1540781.