Longitudinal psychosocial outcomes in two cohorts of adult survivors from childhood acute leukemia treated with or without cranial radiation.

AIM: In 1982, 60 children affected by acute lymphoblastic leukemia, treated between 1974 and 1978 with or without cranial radiation, in complete remission, and 2 years at least after stopping therapy, were submitted to a detailed psychological investigation. All those who underwent cranial radiation showed memory impairment. Twenty years after, 49 of them were still alive. On the occasion of the 30th Anniversary of the Department, we contacted their parents and invited them to an encounter: 43 agreed. We wished to learn as much as possible about their current health and psychosocial status. The principal aim of our research was to investigate if any differences existed between the 2 groups and to measure the psychosocial performance of these subjects against comparable Italian figures extracted from the last national census (Census 2001). METHODS: We chose the narrative style for the encounters, because most of them knew about us only from their parents, and we were afraid to use with them questionnaires and official interviews. Most of them did not even know the name of their disease. Our study shows that the whole group of adults had achieved good physical, cognitive, emotional and behavioral development and adjustment. Following the narrative approach, we were able to obtain detailed personal information and the values of capacities of each subject. RESULTS: The results showed no significant differences between the 2 groups and the corresponding age-class in the 2001 Italian census as far as education and occupational group were concerned. Only one unemployed subject (with a university degree) was reported among them. The distribution of fathers' occupation perfectly reflected national figures, and long-term survivors in most cases improved their social level. As regards marriage and fertility no difference was seen between the 2 groups. All these statistics parallel, if not exceed, national figures. CONCLUSIONS: The analysis and comparison of long-term cancer survivors' quality of life can yield important clues and insight, and thus contribute to improved approaches towards newly diagnosed patients, not only regarding treatment protocols, but also psychosocial outcomes.