Changes and findings in registry patients at follow-up assessment at CaRe High

Introduction

FH is characterized by an elevated LDL-C level since childhood, which leads to a severely increased risk of cardiovascular events, that in turn can be reduced to the level of general population by early identification and therapy.  Due to that, the Cascade Screening and Registry for High Cholesterol (CaRe High) was founded in 2014 which entails answering initial questionnaires for patients and physicians as well as Follow-Up (FU) questionnaires for patients only. We aim to gain insights into current care data like target value achievement for FH patients who have been included in the registry for a period of 2.5 years (FU 1) and 5 years (FU 2).

Methods

We included 700 completed FU-questionnaires (551 FU 1, 78.7 %, and 149 FU 2, 21.3 %) in the analysis and compared them with baseline data. The focus of the evaluation was on achieving the LDL-C target value (baseline vs FU 1 vs FU 2) according to 2016 and 2019 ESC guidelines. In addition, we examined the influence of specific risk factors such as age, gender, ASCVD, diabetes mellitus, eGFR, hypertension, smoking, HDL and LDL cholesterol, and on individual risk. Additionally, we have predicted survival curves. We performed Pearson's chi-squared test, Fishers' exact test, and Cox regression.

Results

Comparing baseline, FU 1, and FU 2, 29.2%, 41.7% and 58.6% (ESC guideline 2016) and 11.1%, 17.8% and 27.7% (ESC guideline 2019) achieve target values. The highest influence on individual risk is combined with ASCVD and eGFR>60ml/min. Survival curves show that the risk for patients included in the CaRe High registry without an ASCVD event is comparable to that of the general population. An existing event significantly worsens the prognosis. The mean eGFR decreases by an average of 1.26 ml/min per year from inclusion to follow-up. Although this decrease is slightly higher than that of healthy persons, it is significantly lower than that of patients who suffer from a metabolic disease such as type 2 diabetes.

Discussion

Follow-up data show that participation in CaRe High leads to an increase in the number of patients who achieve the LDL-C-target values. Moreover, participation has a significant effect on life expectancy, especially if there was no ASCVD event. This confirms the prognosis that the cardiovascular risk in patients with FH without an existing event can be reduced to that of the general population through early identification and adequate therapy. This makes it even more important to identify FH patients before the first event.