Swiss Paraplegic Centre, Nottwil, Switzerland.
Faculty of Health Sciences and Medicine at the University of Lucerne, Lucerne, Switzerland.
Swiss Med Wkly. 2024 Sep 4;154:3836. doi: 10.57187/s.3836.
The transition from paediatric to adult medical care is a critical period for adolescents with spina bifida, often marked by deteriorating health and functional status.
To describe the health status and functioning of individuals with spina bifida at the time of transition from paediatric to adult care and to identify risk profiles for potentially modifiable secondary health conditions (urinary tract infections, pressure injuries, respiratory problems and obesity).
Descriptive study of data (derived from medical records) from all adolescents and young adults with spina bifida aged 15-25 years who were referred to a single specialised spinal cord injury centre as part of the transition programme during the period from 1 September 2015 to 31 May 2022. Descriptive statistics were used to describe the study population and to analyse the frequency and co-occurrence of congenital and acquired secondary health conditions. The equality of proportions test was used to test the prevalence of secondary health conditions based on important personal and clinical characteristics.
We included 43 adolescents with spina bifida with a mean age of 18.4 years (SD 2.5); in 63% of them the neurological level was lumbar, and around 50% of them were wheelchair-dependent. The median Spinal Cord Injury Measure (SCIM) III score was 72 (IQR 61-89). The mean number of secondary health conditions at time of transition was 8.8. The most prevalent secondary health conditions were lower urinary tract dysfunction, bowel dysfunction, sexual dysfunction and contractures. Respiratory problems were more prevalent in females and in individuals with lower SCIM III scores, whereas no differences were observed in the prevalence of other modifiable secondary health conditions. Clustering of secondary health conditions was mainly seen for urinary tract infection + pressure injury and for urinary tract infection + pressure injury + obesity.
The prevalence of secondary health conditions among individuals with spina bifida at time of transition is alarmingly high and functional profiles underscore the need for supporting adolescents and young adults with daily medical issues. The study highlights the critical role of transition programmes and interdisciplinary follow-up care in preventing health problems and improving functioning and independence in everyday life.
从儿科到成人医疗的过渡时期对于患有脊柱裂的青少年来说是一个关键时期，这一时期通常伴随着健康和功能状况的恶化。
描述从儿科过渡到成人医疗时患有脊柱裂的个体的健康状况和功能，并确定潜在可改变的继发性健康状况（尿路感染、压疮、呼吸问题和肥胖）的风险概况。
对 2015 年 9 月 1 日至 2022 年 5 月 31 日期间，作为过渡计划的一部分，转诊到一家专门的脊髓损伤中心的所有 15-25 岁患有脊柱裂的青少年和年轻人的数据（源自病历）进行描述性研究。使用描述性统计来描述研究人群，并分析先天性和获得性继发性健康状况的频率和共同发生情况。使用比例平等检验根据重要的个人和临床特征来检验继发性健康状况的患病率。
我们纳入了 43 名患有脊柱裂的青少年，平均年龄为 18.4 岁（SD 2.5）；其中 63%的神经水平为腰椎，约 50%的人依赖轮椅。脊髓损伤测量（SCIM）III 评分中位数为 72（IQR 61-89）。过渡时平均继发性健康状况数量为 8.8。最常见的继发性健康状况是下尿路功能障碍、肠道功能障碍、性功能障碍和挛缩。女性和 SCIM III 评分较低的个体中更常见呼吸问题，而其他可改变的继发性健康状况的患病率则没有差异。继发性健康状况的聚类主要见于尿路感染+压疮和尿路感染+压疮+肥胖。
在过渡时期，患有脊柱裂的个体的继发性健康状况的患病率高得惊人，功能概况强调了支持青少年和年轻人处理日常医疗问题的必要性。该研究强调了过渡计划和跨学科随访护理在预防健康问题以及提高日常生活中的功能和独立性方面的关键作用。
