AIM: To assess the quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia (FH) and their parents. METHODS: 69 FH children on statin therapy and 87 parents (51 families) participated in this study. Quality of life of the children, and anxiety levels of both the children and their parents, were investigated using self-report questionnaires. In addition, a questionnaire was designed to evaluate FH-specific concerns of these children and their parents on six different topics: 1, knowledge about FH; 2, experience of the disease; 3, family communication; 4, screening; 5, diet; and 6, experience of medication therapy. RESULTS: FH children and their parents reported no problems with regard to quality of life and anxiety. In contrast, the FH survey showed specific FH-related concerns. One-third of the children thought that FH can be cured, and 44% of the children suffered from the fact they have FH, but taking medication makes them feel safer (62%). The majority of the children kept a low cholesterol diet and more than 50% took care not to eat too much fat. Almost 38% of the parents experienced FH as a burden to their family and 79% suffered because their child had FH. CONCLUSION: These findings show that statin-treated children with FH and their parents did not report affected psychosocial functioning, but did show specific FH-related concerns.
AIM: To assess the quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia (FH) and their parents. METHODS: 69 FH children on statin therapy and 87 parents (51 families) participated in this study. Quality of life of the children, and anxiety levels of both the children and their parents, were investigated using self-report questionnaires. In addition, a questionnaire was designed to evaluate FH-specific concerns of these children and their parents on six different topics: 1, knowledge about FH; 2, experience of the disease; 3, family communication; 4, screening; 5, diet; and 6, experience of medication therapy. RESULTS: FH children and their parents reported no problems with regard to quality of life and anxiety. In contrast, the FH survey showed specific FH-related concerns. One-third of the children thought that FH can be cured, and 44% of the children suffered from the fact they have FH, but taking medication makes them feel safer (62%). The majority of the children kept a low cholesterol diet and more than 50% took care not to eat too much fat. Almost 38% of the parents experienced FH as a burden to their family and 79% suffered because their child had FH. CONCLUSION: These findings show that statin-treated children with FH and their parents did not report affected psychosocial functioning, but did show specific FH-related concerns.
Authors: Karen Forrest Keenan; Robert M Finnie; William G Simpson; Lorna McKee; John Dean; Zosia Miedzybrodzka Journal: J Community Genet Date: 2018-06-14