Hodgkin's disease: quality of life in future trials

It is of great importance to collect data of objective as well as subjective morbidity in patients cured for Hodgkin's disease. Such information may be used when new treatment strategies are discussed, in patients information and communication, to establish rehabilitation programs and to identify individuals who may benefit from rehabilitation. Measurement of health related quality of life (HRQOL) may give important information on how the cancer and/or the treatment has influenced the patients. There is no gold standard instrument for measurement of HRQOL in cancer. However, it is a consensus to use multidimensional patients rated measures with a standard format and scoring procedure. SF-36, EORTC QLQ-C30 and FACT are widely used in Europe and North America. Domain specific instruments includes a more comprehensive evaluation of a specific domain, for example anxiety or fatigue. Fatigue seems to be a prevalent symptom in Hodgkin's disease survivors and might affect patients' ability to perform normal activities and will often reduce their quality of life. Fatigue is defined as a subjective feeling of tiredness and might be measured by standardised and validated instruments such as the Fatigue Questionnaire (FQ) and the Multi-Dimensional Fatigue Inventory (MFI-20). Clinical significance might be defined as a meaningful difference based on consensus by the patient, the doctor and the society. In oncology there is no agreement of how long a meaningful difference in survival should be. For HRQOL a difference between 7 to 10 on a scale ranking from 0 to 100 has been regarded as clinical significant by some researchers. Another strategy to approach the issue of clinical significance is to use norms-estimates from the normal population- and/or reference estimates as guidelines. The long-term complication of the successful treatment of Hodgkin's disease reinforced the need for continued surveillance of treatment and related morbidities. Fatigue is a prevalent symptom and detailed diagnostic work-up is essential to identify patients with this problem. More knowledge about possible biological causes is required in order to understand fatigue and the impact on quality of life among Hodgkin's disease survivors.