Mah Jean K, Thannhauser Jennifer E
Division of Neurology, Department of Pediatrics, Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada.
Division of Applied Psychology, Faculty of Education, University of Calgary, Calgary, Alberta, Canada.
Adolesc Health Med Ther. 2010 Jun 17;1:31-43. doi: 10.2147/AHMT.S7594. eCollection 2010.
Multiple sclerosis (MS) is a progressive inflammatory demyelinating disorder of the central nervous system that is increasingly recognized in children and adolescents. This realization comes with additional concerns about existing therapeutic options and the impact of the disease on health-related outcomes of adolescents with MS. This five-part review provides an update on management strategies relevant to the pediatric MS population. The first section gives an overview on the epidemiology and natural history of early onset MS. The second section outlines currently available MS treatments, including medications during acute relapses and long-term immunomodulatory therapies. The third section highlights adherence issues pertaining to MS, including the challenges uniquely faced by adolescents. The fourth section provides a summary of research into quality of life and psychosocial consequences of pediatric onset MS. Attention is drawn to the grief experience of affected adolescents and the importance of peer relationships. Finally, the family resilience framework is presented as a conceptual model to facilitate optimal adaptation of adolescents with MS. Healthcare professionals can promote resilience and treatment adherence by ensuring that these individuals and their families are sufficiently informed about available MS treatments, providing instrumental support for managing potential medication side effects, and addressing age-appropriate developmental needs.
多发性硬化症(MS)是一种中枢神经系统的进行性炎性脱髓鞘疾病,在儿童和青少年中越来越受到关注。这一认识引发了对现有治疗选择以及该疾病对患有MS的青少年健康相关结局影响的更多担忧。这篇分为五个部分的综述提供了与儿科MS人群相关的管理策略的最新情况。第一部分概述了早发性MS的流行病学和自然史。第二部分概述了目前可用的MS治疗方法,包括急性复发期间的药物治疗和长期免疫调节疗法。第三部分强调了与MS相关的依从性问题,包括青少年所面临的独特挑战。第四部分总结了关于儿童期发病MS的生活质量和心理社会后果的研究。关注受影响青少年的悲伤经历以及同伴关系的重要性。最后,提出了家庭复原力框架作为一个概念模型,以促进患有MS的青少年的最佳适应。医疗保健专业人员可以通过确保这些个体及其家庭充分了解可用的MS治疗方法、为管理潜在药物副作用提供工具性支持以及满足适合其年龄的发展需求,来促进复原力和治疗依从性。