Sammanfattning
Background. Over 80 % of children with acute lymphoblastic leukaemia (ALL) survive, but many develop late effects after the therapy. The aim of the study was to reveal how much Norwegian adults treated for ALL before the age of 16 know about the risk of late effects.
Material and method. The participants (n = 139) were recruited from a cross-sectional study (ALLBARN) of adults treated for acute lymphoblastic leukaemia before the age of 16 in the period 1970-2002. Their knowledge of diagnosis, treatment and long-term effects was investigated in a semi-structured interview.
Results. A median number of 23 years after treatment for acute lymphoblastic leukaemia, 85 (61 %) of the participants were unable to give examples of possible late effects of cancer therapy. Reduced fertility was known to 35 participants (25 %), while few were aware of the risk of heart failure (n = 3) or secondary malignancy (n = 5). Those who were aware of late effects usually had personal experience of the problem. However, the participants had a sound knowledge of their own diagnosis and the therapy they had submitted to.
Interpretation. Long-term survivors of acute lymphoblastic leukaemia in childhood and adolescence know little about the risk of late effects. The dissemination of information about the potential consequences of the therapy should be improved.