Sickle Cell Disease, Neurocognitive Disorders, Social Participation
Condition: Sickle Cell Disease
MeSH terms: Anemia, Sickle Cell; Neurocognitive Disorders
Study type: Observational

Summary: 
      This project will promote the development of transdisciplinary analyses. Neuropsychological
      disorders will be explored with the usual appropriate tests done by psychologists and
      neuropsychologists regularly involved in the management of sickle cell disease affected
      children. For the social sciences' component, various methods will be used: Measure of the
      Life habits (MHAVIE), Measure of Environmental Quality (MQE) and semi-guided interviews will
      complete the collection of qualitative data. The expected results concern the identification
      of the barriers or facilitators the sickle cell patients might face in their social
      participation, whether they are affected or not by neurological disorders.
    

Detailed description: 
      Sickle cell anaemia, which is the most frequent genetic disease in France, requires an early
      and optimal care to reduce its morbidity and mortality. Children with sickle cell anaemia who
      are significantly anaemic may present neurological complications including stroke with or
      without clinical signs. A major risk associated to these strokes is the impairment of the
      general intellectual ability and learning ability, essentially resulting from
      neuropsychological disorders affecting intellectual functioning, executive and attentional
      functions. Although the negative impact of sickle cell anemia on the quality of life of the
      affected children and adolescents is well documented, no study has been focused on the role
      played by the neurocognitive disorders on their social participation. The objective of this
      project is the assessment of the influence of neurocognitive disorders in the social
      participation of children and adolescent with sickle cell anemia (6 to 16 years old),
      followed in Guadeloupe. This project will promote the development of transdisciplinary
      analyses. Neuropsychological disorders will be explored with the usual appropriate tests done
      by psychologists and neuropsychologists regularly involved in the management of sickle cell
      disease affected children. For the social sciences' component, various methods will be used:
      Measure of the Life habits (MHAVIE), Measure of Environmental Quality (MQE) and semi-guided
      interviews will complete the collection of qualitative data. The expected results concern the
      identification of the barriers or facilitators the sickle cell patients might face in their
      social participation, whether they are affected or not by neurological disorders
    

Intervention name(s): Measure of the Life habits (MHAVIE)
Intervention type(s): Other
Intervention description(s): Life habits include daily activities and social in 6 groups. Environmental factors include social (9 different subgroups) and physical factors (7 different subgroups).
Personal factors are person related parameters (gender, age, sociocultural ethnic, skills, deficiencies factors,…).
Other intervention name(s): Measure of Environmental Quality (MQE); semi-guided interviews
Observational model: Case-Control
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        This study concerns patients with sickle cell anemia, followed by physicians in Guadeloupe.
      
Keywords: neurocognitive disorders; social participation