Sickle cell disease representation as a determinant for patient compliance

Sickle Cell Disease (SCD) is a major healthcare and societal problem that affects millions of people worldwide. In France, SCD is the most common genetic disorder. Although medical care is improving, non-compliance rates are still high leading to a high rate of hospitalization. In other chronic illnesses, compliance has been explained by dimensions of the illness representation (as defined in the Common Sense Model [CSM] of Leventhal). However no such work has been done in genetic disorder nor have data been collected in SCD. Here we show that illness representation influences compliance. Analysis showed that three main factors of representation might have an influence on compliance in SCD and explain 29.2% of the variance. The emotional representation (emotional perception of SCD), treatment control (perceived effectiveness of treatments) and timeline acute/chronic (perceived duration of illness) indicating that patients with negative emotions on SCD are less compliant and those who perceive the effectiveness of their treatment and SCD as a chronic disease are more compliant. Compliance in SCD appears to be influenced by illness representations in the CSM. This give us a theoretical background to understand adaptation to the SCD and to propose psychosocial interventions aiming at a better compliance in people with SCD. (C) 2018 Elsevier Masson SAS. All rights reserved.