Adherence in adults with sickle cell disease: Using illness perception to understand the low adherence rate

Introduction

Sickle cell disease (SCD) is the most common monogenic disease, and is characterised by extreme pain episodes. Despite available efficacious treatments, adherence rates are low leading to high hospitalisation rate.

Objective

Explore the relationship between hydroxyurea adherence among adults with SDC and illness perceptions.

Method

We performed a cross-sectional study among 211 adults with SCD and assessed illness perception, their adherence and their cognitions about their treatment.

Results

The adherence rate was very low, and patients reported misconceptions regarding SCD. The factor analysis of the illness perception dimensions revealed a two-factor model, accounting for 66.5% of the total variance. Based on the factor analysis, three clusters of participants were identified corresponding to three types of perceptions of SCD and different levels of adherence.

Conclusion

The combination of a low capacity to adapt to their illness (factor 1) with a strong negative experience of their health condition (factor 2) seems negatively link to the therapeutic adherence of adults with SCD.