Familial hypercholesterolaemia: a pilot study of parents’and children's concerns

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Abstract
Objective: To assess psychosocial concerns of families with familial hypercholesterolaemia. Methods: One‐hundred‐and‐fifty‐four single or pairs of parents of children age 6‐16 years responded to a specifically designed questionnaire. One child from each family was interviewed. Results: Eleven percent of parents thought that their quality of life would have been better had they not known about the disease. None agreed totally that they wished that the diagnosis had not been made. However, 20% reported familial conflicts and 8% that their child's emotional or social life had been adversely affected. Conflicts and adverse effects were associated with higher scores on the Child Behaviour Checklist (CBCL). Among the children, worry about cardiovascular disease (affirmed by 22%) was related to male sex and CBCL score. Relevance: Most families do not indicate that they have experienced psychosocial problems due to familial hypercholesterolaemia. Parental ratings of the child's behavioural adjustment may identify vulnerable children.