Sickle Cell Disease, Neurocognitive Disorders, Social Participation

Study Overview
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Brief Summary
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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
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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

Official Title
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Sickle Cell Disease, Neurocognitive Disorders, Social Participation

Conditions
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Sickle Cell Disease

Intervention / Treatment
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* Other: Measure of the Life habits (MHAVIE)


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Sickle cell anemia Age between 6 and 16 years inccuded, attending the centre of reference for sickle cell disease in Guadeloupe Informed consent Medical insurance Exclusion Criteria: Other sickle cell syndrome other than SS or Sb-thal Less than 6 years old or older than 16 Attending other sickle cell departments No medical insurance

Ages Eligible for Study
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Minimum Age: 6 Years
Maximum Age: 16 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Case<br>Children with sickle cell anemia attending the centre of reference for sickle cell disease in Guadeloupe. | Other: Measure of the Life habits (MHAVIE)<br>* 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,…).<br>* Other names: semi-guided interviews;|
| Control<br>Control children without chronical disease | Other: Measure of the Life habits (MHAVIE)<br>* 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,…).<br>* Other names: semi-guided interviews;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| MHAVIE-Children | Assessment of Life Habits-LIFE-H | Inclusion | 
| MQE | Measure of Environmental Quality (MQE) | Inclusion | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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neurocognitive disorders, social participation