Quality of life, anxiety and concerns among statin‐treated children with familial hypercholesterolaemia and their parents.

Abstract

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.

The Agenda for Familial Hypercholesterolemia

“…22,24 Patients appeared to feel safer when taking their medications, but women appear to be more worried about the effects that the medications may have on their or their children's bodies. [22][23][24] In general, ≈80% of patients self-report that medication and dietary adherence and clinical benefits outweigh other concerns. Nonetheless, slightly <10% would rather not comply with treatment recommendations; the remainder are intermittently compliant.…”

“…All studies were conducted outside the United States and used different methods to assess QOL. [22][23][24][25][26][27] In general, pediatric and adult FH patients receiving dietary and pharmacotherapy have a QOL comparable to that of healthy reference populations. 22,24 Patients appeared to feel safer when taking their medications, but women appear to be more worried about the effects that the medications may have on their or their children's bodies.…”

“…[22][23][24][25][26][27] In general, pediatric and adult FH patients receiving dietary and pharmacotherapy have a QOL comparable to that of healthy reference populations. 22,24 Patients appeared to feel safer when taking their medications, but women appear to be more worried about the effects that the medications may have on their or their children's bodies. [22][23][24] In general, ≈80% of patients self-report that medication and dietary adherence and clinical benefits outweigh other concerns.…”

International Developments in the Care of Familial Hypercholesterolemia: Where Now and Where to Next?

“…In a Norwegian and Dutch study, FH children and their parents did not report anxiety effects 100) . However, the children's knowledge of the disease was poor, emphasizing the benefits of comprehensive family support 101) . Few studies have accessed the quality of life (QOL) of patients with FH.…”

I Diretriz Brasileira de Hipercolesterolemia Familiar (HF)

“…Cerca de 40% das crianças sofrem Diretrizes I Diretriz Brasileira de Hipercolesterolemia Familiar (HF) por serem portadores, mas utilizar hipolipemiantes os faz sentir mais seguros em cerca de 60%. Mais de 50% fazem dieta e 79% dos pais sofrem porque os filhos têm hipercolesterolemia familiar 193 (Classe IIb, Nível B).…”