Familial hypercholesterolemia and young patients' thoughts on own condition and treatment

Abstract Objectives Familial hypercholesterolemia (FH) is a hereditary and usually asymptomatic condition characterized by elevated blood cholesterol and increased risk of premature cardiovascular disease. It is treated with dietary modifications and lipid lowering drugs. The objective was to learn about young FH patients’ perceptions and choices regarding treatment. Methods Data were collected through in-depth interviews with 24 patients (ages 16–35), and analysed according to Grounded Theory. Results The findings are presented as theoretical concepts describing the participants’ way of handling their condition. The core category was identified as “Thoughts of consequences vs. Postponing thoughts of consequences”, which could be described through the following subcategories: 1. Normalising the condition, 2. Belittling of treatment vs. Committed to treatment and 3. Trust in advice vs. Avoid unnecessary interference. The participants’ position regarding these categories was described to affect motivation and challenges with treatment. Conclusions Participants who postpone the thoughts of consequences, belittle the treatment and avoid unnecessary interference represent a challenge to health care practitioners. Practical implications Practitioners should explore aspects such as thoughts of consequences, view of treatment and the feeling of interference to be able to better understand illness behaviour, adjust their communication and hopefully improve adherence.