Service de Pédiatrie, AP-HP, Hôpital Louis-Mourier, F-92700, Colombes, France.
Unité de Recherche Clinique, Fondation Rothschild, F-75019, Paris, France.
Eur J Pediatr. 2018 Feb;177(2):193-203. doi: 10.1007/s00431-017-3050-5. Epub 2017 Nov 29.
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.
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.
镰状细胞病(SCD)是一种危及生命的慢性疾病,需要制定儿科治疗计划,该计划需考虑心理、家庭和跨文化因素的影响。在法国 Colombes 的 Louis-Mourier 医院(APHP),我们引入了一种创新性的儿科-心理合作模式,即临床心理学家在计划会诊时陪同儿科医生。我们使用标准化的无文化工具和临床访谈,评估了在 Colombes 和另外两个儿科病房接受治疗的儿童及其父母,以评估 SCD 的心理影响。我们首先全面介绍了 SCD 对儿童及其家庭的不同影响方式。然后,我们讨论了一项评估综合心理-医学治疗模式与常规医疗护理模式整体疗效的研究结果。与常规医疗护理相比,综合护理模式中的儿童在 Rey-Osterrieth 复杂图形测试中认知功能的改善更为明显。
研究结果表明,“合作实践”的概念可以提高儿童应对 SCD 的能力,是 SCD 长期护理的一种有前途的方法。已知情况:
镰状细胞病的疼痛危象不可预测,出现在儿童早期;
压力以及与 SCD 相关的复杂心理和跨文化问题可能会加重儿童的症状;
标准儿科护理和研究主要涉及医疗问题。
对 SCD 在儿科治疗中以及父母痛苦的心理影响进行基于证据的研究;
首次使用标准化无文化工具的研究;
在创新性“合作”模式下,认知功能得到改善。