Living Well-Informed After a Hodgkin Lymphoma Diagnosis: A Study on Empowering Patients Through Information and Digital Support

Hodgkin lymphoma is a malignant disease of the lymphatic system that primarily affects young adults. Thanks to modern treatments, the chances of recovery are very good today. Nevertheless, the diagnosis takes a heavy psychological toll, and many patients feel uncertain or inadequately informed, especially in the early stages of the disease. The EMBrACe study aims to support patients precisely during this phase.

The goal of the EMBrACe study is to better inform patients with Hodgkin lymphoma about their disease by providing them with reliable, understandable, and tailored content via an interactive online platform (the EMBrACe platform). Using scientifically validated questionnaires, the study will then examine whether patients feel better informed as a result compared to the control group and whether this also has a positive effect on their quality of life. At the heart of the study is the EMBrACe platform, a digital platform that provides medically reviewed, patient-centered information on Hodgkin lymphoma. It is designed not only to educate patients about their disease, diagnosis, and treatment, but also to help them make informed decisions, connect with others affected by the disease, and manage their condition independently over the long term.

As part of the study, patients are randomly assigned to two groups. The treatment group receives full access to the EMBrACe platform for one year, while the control group receives only limited access to publicly available websites. Using scientifically validated questionnaires, the study will then assess how well-informed patients feel, the level of their health literacy in terms of making informed decisions, and how their quality of life changes over time. The study is double-blind, meaning that neither the medical staff nor the patients know which group they have been assigned to.

Eligible participants are women and men between the ages of 18 and 60 with a confirmed initial diagnosis of Hodgkin lymphoma who have not yet received treatment. Participants must speak German, be willing to take part in online surveys, and consent to the collection of personal data as part of the study. Individuals who lack language proficiency or are unwilling to participate are excluded.