Henriksen Mari Wold, Breck Hilde, von Tetzchner Stephen, Paus Benedicte, Skjeldal Ola H
Drammen Hospital, Vestre Viken Hospital Trust, Drammen, Norway.
University of Oslo, Blindern, Oslo, Norway.
Dev Neurorehabil. 2020 Feb;23(2):106-112. doi: 10.1080/17518423.2019.1646341. Epub 2019 Jul 25.
: To examine main health issues in a population of females with Rett syndrome, with a focus on individuals aged 36 or older. : A national survey including 85 females, divided into a younger (1-20 years), a middle (21-35 years) and an older group (36-66 years). Data include clinical examination, medical records and parental interviews. Prevalences of six main medical issues (scoliosis, ambulation, growth, respiration, gastrointestinal dysmobility and epilepsy) and severity scores in the three groups were compared. : Mean severity scores were 11.8, 15.1 and 13.7 (from younger to older), and the difference between the younger and the middle group was significant. No other major significant prevalence differences were observed. : Most main medical issues in Rett syndrome continued to be a major concern in adulthood, but health did not seem to decline with increasing age. The results emphasize the need for clinical follow-up throughout adulthood.
研究患有雷特综合征女性群体中的主要健康问题，重点关注36岁及以上个体。
一项全国性调查，纳入85名女性，分为年轻组（1至20岁）、中年组（21至35岁）和老年组（36至66岁）。数据包括临床检查、病历和家长访谈。比较三组中六个主要健康问题（脊柱侧弯、行走、生长、呼吸、胃肠运动障碍和癫痫）的患病率及严重程度评分。
平均严重程度评分分别为11.8、15.1和13.7（从年轻组到老年组），年轻组和中年组之间的差异显著。未观察到其他主要的显著患病率差异。
雷特综合征的大多数主要健康问题在成年期仍然是主要关注点，但健康状况似乎并未随年龄增长而下降。结果强调了成年期全程临床随访的必要性。
