Sickle Cell Disease representation as a determinant for patient compliance

Abstract

Background: Sickle Cell Disease (SCD) is a major health care 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 have 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 relation to genetic disorder nor has data been collected on SCD. Method: Population: 79 adults recruited in French Parisian hospitals. Psychometrics: Representation: Illness Representation Questionnaire-Revised (IPQ-R), Compliance: Morisky Medication Adherence Scale (MMAS), Adherence: Beliefs about Medicine Questionnaire (BMQ), Findings: Regression showed that three main factors of representation influence 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. Discussion: Compliance in SCD is 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.