Assessment of health status and health-related quality of life in survivors of Hodgkin's disease in childhood

Although the great majority of children with Hodgkin's disease survive with modern treatment strategies, the list of late sequelae is long, yet there is no published information on the comprehensive health status and health-r elated quality of life (HRQL) in this population. In the experience of a si ngle institution, survivors of Hodgkin's disease in childhood were invited to self-report on their health status using a 15-item questionnaire connect ed to the Health Utilities Index, a series of multi-attribute health status classification systems that, in turn, are linked to preference functions w hich provide single-attribute and global utility scores for HRQL. The mean global utility score was 0.85 (on a 0 = dead to 1.0 = perfect health scale) , a figure less than that in survivors of acute lymphoblastic leukemia (ALL ) but comparable to that in survivors of brain tumors (0.84) or extremely l ow birthweight (ELBW 0.82). The burden of morbidity is emphasized by the ra tio of the numbers of health states per patient:0.67 for survivors of Hodgk in's disease, 0.66 for survivors of brain tumors, 0.39 for survivors of ELB W, 0.47 for survivors of high-risk ALL and 0.28 for survivors of standard-r isk ALL. In Hodgkin's disease survivors, the attributes affected most commo nly and severely were pain, cognition and emotion. This experience demands exploration of the health status and HRQL in a much larger cohort of such s urvivors, perhaps in the context of co-operative group studies. Int. J. Can cer Suppl. 12:32-38, 1999. (C) 1999 Wiley-Liss, Inc.