gms | German Medical Science

Although treatment regimens for Hodgkin‘s lymphoma have become more sophisticated, little is known about the prevalence of limitations in quality of life and problems of social integration in long-term survivors. Therefore, we investigated the status of long-term survivors of Hodgkin‘s lymphoma and a control group using a pre-validated questionnaire addressing quality of life and life situation issues. We contacted 1981 patients, who were enrolled in the German Hodgkin Study Group (GHSG) Studies HD 1-6. All patients were treated according to the treatment protocols HD1-3 (1981–1988) and HD 4-6 (1988–1993). The patients with a current status of complete remission were asked to complete a quality of life (QoL) questionnaire (EORTC QLQ C-30) and a fatigue questionnaire (MFI20) as well as a thorough questionnaire dealing with the relevant issues of social re-integration after treatment and the major aspects of the life situation. The results were compared with the data from 935 controls, matched for age, gender and living area. Eight-hundred and eighteen questionnaires from the patients were available for analysis. The median time between the end of treatment and completing the questionnaire was 5.2 years. Results include limitations in various areas of the perceived subjective quality of life as well as high fatigue levels in general and specifically in a subset of patients with Hodgkin‘s lymphoma. Differences between patients and controls were highly significant, even many years after end of treatment. Unemployment was a major problem after cure and a number of life situation areas showed significant differences between patients and controls. In particular infertility was a relevant problem in the patient group. Quality of life and fatigue dimensions are significantly influenced by several clinical and non-clinical factors but surprisingly directly treatment related factors did not show any substantial effect on quality of life domains and fatigue levels. Further investigations are warranted to explore the effectiveness of treatment strategies and to find out how to best adapt primary therapy to possible long-term sequelae in patients with Hodgkin’s disease.