| dc.description.abstract | Background: Familial hypercholesterolemia (FH) is a hereditary condition, causing increased individual risk of premature cardiovascular disease (CVD). Ideally, the condition is treated with lipid lowering drugs and dietary modifications from a young age. A large proportion of patients diagnosed with FH, are treated at the Oslo University Hospital’s out-patient Lipid Clinic (LC), with yearly follow-up consultations. However, some patients do not attend these consultations. Considering the risk connected with non-adherence to treatment, there is a need for knowledge on how this patient group handle their condition. Aim: This study focused on young adults who stopped attending the LC for medical and nutritional consultations. The aim of the study was to explore how they managed possible challenges related to living with FH and following the lifelong treatment. Participants and research method: The study recruited 11 young adults under the age of 35, diagnosed with hypercholesterolemia at a young age of whom 8 had genetically verified FH. The study followed the steps of Grounded theory (GT), and 11 in-depth interviews were conducted and analysed according to GT. Results: The study findings are presented as theoretical concepts describing the participants’ way of handling their condition. The main concern and its core category, were identified as “How to relate to FH?” and “Postponing the thoughts of consequences”, respectively. Further analysis of the core category revealed that the concept could be described through the following subcategories: 1. Normalising the condition, 2. Belittling of treatment and 3. The need for autonomy. The study found that non-attendance to consultations at the LC did not necessarily mean non-adherence to treatment. However, half of those with genetically confirmed FH (4 out of 8 participants) did not use lipid lowering drugs regularly, and none of the self-reported cholesterol values reached FH’s treatment goals (TC<4.5 mmol/L). Several participants reported regular visits to their general practitioner (GP), but none of them had received dietary counselling since their last visit at the LC, with an average duration of 10 years. The participants did not express concerns about their treatment approach or future health, nor did they feel the need for follow-ups on dietary advice at the LC. The participants reported that their diagnosis had not reduced their perception of quality of life (QOL). Conclusion: The participants had similar perceptions about living with hypercholesterolemia. The overall impression was a content group of young adults living with a diagnosis that did not affect their lives to any great extent. The abstract concept of “Postponing the thoughts of consequences” applied all participants in the study, and involved a comfortable and relaxed way of handling the condition and its treatment. However, the study findings show that it is important to acknowledge the possibility that FH patients may stop attending medical and nutritional consultations, and that it could involve non-adherence to treatment. A closer cooperation between GPs and the LC seem favourable to ensure optimal treatment outside the LC. Clinical nutritionists and physicians may benefit from letting patients speak freely about their approach to treatment in order to help patients enhance adherence. | eng |