Anemia, Sickle Cell Clinical Trial
Official title:
The Impact of Systematic Psychological and Medical Care for Treatment of Pediatric Patients With SCD: : A Luxury or a Necessity?
Sickle cell disease (SCD), a genetically transmitted blood disease, necessitates life-long care. In children, the disease may cause intense pain and other severe complications. Studies show that sources of stress, as well as complex psychological and intercultural issues associated with SCD, often aggravate symptoms. At Louis Mourier hospital, the treatment model used is systematic psychological and medical care. Our hypothesis is that this care is beneficial for both the children and their families as seen in improved quality of life and positive impact on medical symptoms.
In this observational multicentric pilot study, our goal is to assess the effectiveness of a systematic medical-psychological approach in place for the past 6 years at the Louis Mourier Hospital, as compared to the usual practice in 2 other pediatric hospitals for SCD which focus essentially on the medical issues associated with SCD. Two psychologists will interview 80 children and their primary care-takers at Louis Mourier hospital, and 80 children and their care-takers of the other two centers, using a standard comprehensive care for SCD. For the parents, we propose to use a semi-structured interview including a prepared interview guide, the Loneliness Questionnaire, and the parents' version of KIDSCREEN (10 items). For the children, according to their age, The Rey-Osterrieth Complex Figure Test (ROCF), the Draw a Person in the Rain Test (DPR), the KIDSCREEN questionnaire, and semi-directed interview will be used. Relevant information from the patients' medical record directly related to the symptomatic expression of the SCD will be noted on a data collection form. This phase is scheduled to last 12 months. A statistical and qualitative analysis of the results will be carried out at the end of the study. ;
Observational Model: Cohort, Time Perspective: Retrospective
Status | Clinical Trial | Phase | |
---|---|---|---|
Recruiting |
NCT06078696 -
Siplizumab for Sickle Cell Disease Transplant
|
Phase 1/Phase 2 | |
Completed |
NCT04134299 -
To Assess Safety, Tolerability and Physiological Effects on Structure and Function of AXA4010 in Subjects With Sickle Cell Disease
|
N/A | |
Completed |
NCT02561312 -
Comparison of Two Methods of Transfusion for Stroke Prevention in Sickle Cell
|
||
Completed |
NCT00890396 -
Long-Term Effects of Hydroxyurea in Children With Sickle Cell Anemia (The BABY HUG Follow-up Study)
|
||
Completed |
NCT00059293 -
Transcranial Doppler (TCD) Ultrasound of Subjects Enrolled in BABY HUG - Ancillary to BABY HUG
|
||
Terminated |
NCT00034528 -
Stem Cell Transplantation After Reduced-Dose Chemotherapy for Patients With Sickle Cell Disease or Thalassemia
|
Phase 2 | |
Completed |
NCT00005277 -
Cooperative Study of The Clinical Course of Sickle Cell Disease
|
N/A | |
Active, not recruiting |
NCT04170348 -
Daily Vitamin D for Sickle-cell Respiratory Complications
|
Phase 2 | |
Completed |
NCT04584528 -
Implementing an Individualized Pain Plan (IPP) for ED Treatment of VOE's in Sickle Cell Disease
|
N/A | |
Recruiting |
NCT02286154 -
Therapeutic Response Evaluation and Adherence Trial (TREAT)
|
N/A | |
Completed |
NCT02857023 -
Feasibility and Efficacy of a Home-based, Computerized Cognitive Training Program in Pediatric Sickle Cell Disease
|
N/A | |
Withdrawn |
NCT01925001 -
Phase 2 Study of MP4CO to Treat Vaso-occlusive Sickle Crisis
|
Phase 2 | |
Terminated |
NCT00122980 -
Stroke With Transfusions Changing to Hydroxyurea
|
Phase 3 | |
Completed |
NCT00246077 -
Quality of Life of Children With Sickle Cell Disease Who Are Getting Chronic Transfusions With a Lifeport
|
N/A | |
Completed |
NCT00094887 -
Nitric Oxide Inhalation to Treat Sickle Cell Pain Crises
|
Phase 2 | |
Completed |
NCT00035763 -
Pain in Sickle Cell Epidemiologic Study
|
N/A | |
Terminated |
NCT04091737 -
CSL200 Gene Therapy in Adults With Severe Sickle Cell Disease
|
Phase 1 | |
Completed |
NCT00005300 -
Investigation of Selected Patient Groups From The Cooperative Study of Sickle Cell Disease
|
N/A | |
Recruiting |
NCT04351698 -
SMILES: Study of Montelukast in Sickle Cell Disease
|
Phase 2/Phase 3 | |
Not yet recruiting |
NCT06290401 -
A Socio-ecological Approach for Improving Self-management in Adolescents With SCD
|
Phase 2 |