FAMILIAL HYPERCHOLESTEROLEMIA - A PILOT-STUDY OF PARENTS AND CHILDRENS CONCERNS

Objective: To assess psychosocial concerns of families with familial h ypercholesterolaemia. Methods: One-hundred-and-fifty-four single or pa irs of parents of children age 6-16 years responded to a specifically designed questionnaire. One child from each family was interviewed. Re sults: Eleven percent of parents thought that their quality of life wo uld have been better had they not known about the disease. None agreed totally that they wished that the diagnosis had not been made. Howeve r, 20% reported familial conflicts and 8% that their child's emotional or social life had been adversely affected. Conflicts and adverse eff ects were associated with higher scores on the Child Behaviour Checkli st (CBCL). Among the children, worry about cardiovascular disease (aff irmed by 22%) was related to male sex and CBCL score. Relevance: Most families do not indicate that they have experienced psychosocial probl ems due to familial hypercholesterolaemia. Parental ratings of the chi ld's behavioural adjustment may identify vulnerable children.