Information needs of parents of children with epilepsy

We tested the hypothesis that parents of children with epilepsy may have unmet information needs because their physicians do not fully appreciate what those needs are. Twenty-four parents ranked 60 items of possible concern to them that reflected medical, school, socialization, personality, and family relationship issues. Five neurologists who treat children with epilepsy ranked the same 60 items to predict parental concerns. Ranking was performed using the Q-sort technique. Parents' and physicians' rankings were compared using a two-tailed Mann-Whitney U test. There was a statistically significant difference between the two groups on 17 of the 60 items. The physicians tended to overestimate the importance of medical concerns and underestimate the importance of psychosocial concerns. Poor communication may occur when physicians do not recognize parental concerns or parental levels of understanding of health and illness.