Cross Theodore P, Shanks Alane K, Duffy Lisa V, Rintell David J
1Children and Family Research Center, University of Illinois at Urbana-Champaign, 1010 W. Nevada St, Urbana, IL 61801 USA.
2Partners Pediatric Multiple Sclerosis Center, Massachusetts General Hospital, Boston, MA USA.
J Child Adolesc Trauma. 2019 Jan 8;12(4):425-435. doi: 10.1007/s40653-018-0243-7. eCollection 2019 Dec.
This study interviewed parents to understand families' experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.
本研究对家长进行了访谈，以了解家庭在儿童期发病的多发性硬化症（POMS）方面的经历，POMS占所有多发性硬化症病例的2.7%至10.5%。从两个儿科多发性硬化症中心招募了21组确诊患有POMS的儿童的家长。家庭在诊断前的不确定性、对症状和疾病可能进展的焦虑、对疾病改善治疗（DMT）不确定效果的沮丧以及注射困难方面都经历了压力。家庭必须应对POMS在学校对孩子认知和身体的影响、关于孩子期望和独立性的决策，以及POMS给家庭带来的额外需求。大多数家长报告称从医生、国家多发性硬化症协会和多发性硬化症社区的支持中受益。家庭从DMT中受益，并且，尽管有压力，大多数家庭已成功适应了疾病。文中呈现了受访者给其他家长的建议以及改善家庭支持的建议。
