Adrienne Lerner1, Hervé Picard2, Adrien May3, Vincent Gajdos4, Louise Malou-Dhaussy1, Flaviana Maroja-Cox1, Laurence Salomon2, Marie-Hélène Odièvre5,6,7. 1. Service de Pédiatrie, AP-HP, Hôpital Louis-Mourier, F-92700, Colombes, France. 2. Unité de Recherche Clinique, Fondation Rothschild, F-75019, Paris, France. 3. Service de Pédiatrie, Centre Hospitalier Sud Francilien, F-91100, Evry, France. 4. Service de Pédiatrie, AP-HP, Hôpital Antoine-Béclère, F-92140, Clamart, France. 5. Service de Pédiatrie, AP-HP, Hôpital Louis-Mourier, F-92700, Colombes, France. marie-helene.odievre@aphp.fr. 6. Service de Pédiatrie, AP-HP, Hôpital Armand Trousseau, 26 avenue du Docteur Arnold Netter, F-75012, Paris, France. marie-helene.odievre@aphp.fr. 7. UMR_S1134, Inserm, Université Paris Diderot, Sorbonne Paris Cité, Institut National de la Transfusion Sanguine, F-75015, Paris, France. marie-helene.odievre@aphp.fr.
Abstract
Sickle cell disease (SCD), a life-threatening chronic disease, necessitates a paediatric treatment plan that considers the influence of psychological, family and intercultural factors. At the Louis-Mourier Hospital (APHP) in Colombes, France, we introduced an original paediatric-psychological partnership where a clinical psychologist accompanies the paediatrician at programmed consultations. We evaluated children and their parents treated in Colombes and in two other paediatric units using standardized culture-free tools and clinical interviews to evaluate the psychological repercussions of SCD. We first present a global view of the different ways that SCD affects both children and their families. We then discuss findings from a study evaluating the overall efficacy of an integrated psycho-medical treatment model as compared to the usual medical care model. Children in the integrated care model improved their cognitive functioning assessed using the Rey-Osterrieth complex figure test compared to treatment as usual. CONCLUSION: Findings suggest that the concept of a "partnership practice" can improve children's ability to grapple with SCD and is a promising approach for long-term care of SCD. What is Known: • Painful crises of sickle cell disease are unpredictable and appear in early childhood • Stress as well as the complex psychological and intercultural issues associated with SCD may aggravate the children's symptoms • Standard pediatric care and research deal primarily with medical issues What is New: • Evidence-based research examining the psychological repercussions of SCD in pediatric treatment as well as the parental distress • First study using standardized culture-free tools • Cognitive functioning improves under an innovative "partnership" model.
Sickle cell disease (SCD), a life-threatening chronic disease, necessitates a paediatric treatment plan that considers the influence of psychological, family and intercultural factors. At the Louis-Mourier Hospital (APHP) in Colombes, France, we introduced an original paediatric-psychological partnership where a clinical psychologist accompanies the paediatrician at programmed consultations. We evaluated children and their parents treated in Colombes and in two other paediatric units using standardized culture-free tools and clinical interviews to evaluate the psychological repercussions of SCD. We first present a global view of the different ways that SCD affects both children and their families. We then discuss findings from a study evaluating the overall efficacy of an integrated psycho-medical treatment model as compared to the usual medical care model. Children in the integrated care model improved their cognitive functioning assessed using the Rey-Osterrieth complex figure test compared to treatment as usual. CONCLUSION: Findings suggest that the concept of a "partnership practice" can improve children's ability to grapple with SCD and is a promising approach for long-term care of SCD. What is Known: • Painful crises of sickle cell disease are unpredictable and appear in early childhood • Stress as well as the complex psychological and intercultural issues associated with SCD may aggravate the children's symptoms • Standard pediatric care and research deal primarily with medical issues What is New: • Evidence-based research examining the psychological repercussions of SCD in pediatric treatment as well as the parental distress • First study using standardized culture-free tools • Cognitive functioning improves under an innovative "partnership" model.
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