From childhood to adulthood: Long-term assessment of continuous intrathecal baclofen therapy in non-ambulant spastic cerebral palsy

IF 2.3 3区 医学 Q3 CLINICAL NEUROLOGY
B.H.M. Martens , M. Iskander , D.L. Soudant , G.F. Vles , L.A. Bonouvrié , O.P.M. Teernstra , J.S.H. Vles , R.J. Vermeulen
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Abstract

Background

knowledge about lasting effects of continuous intrathecal baclofen (CITB) therapy during development into adulthood in non-ambulant individuals with cerebral palsy (CP) is limited.

Aim

we assessed individual goals including ease of care, pain reduction, at long term. Also, we aimed to gauge burden of CITB through hospitalization rates, orthopedic surgeries, pump-related complications, pump refills, and satisfaction levels among individuals and caregivers.

Methods

a prospective cohort of 17 individuals with CP (pump implantation 2002–2005) was assessed in 2022. Visual Analogue Scale (VAS) scores, Child Health Questionnaire Parent Form-50 (CHQ-PF50), and a Likert-scale questionnaire, were employed. Data was gathered through interviews with individuals or caregivers.

Results

fifteen individuals were alive at initial follow-up (mean age 31.8 years). Statistically significant improvements in VAS scores for individual goals, ease of care, and pain observed six months post-therapy initiation persisted into adulthood. Mental health and change in health decreased back to baseline at long-term follow-up, other domains of quality in life did not differ significantly. Treatment-related hospital admission was one per 3.6 years, of which 13.2 % were due to complications. The number of patients with scoliosis increased during the years. Despite, the majority (80 %) expressed continued preference for CITB treatment.

Conclusion

improvements of CITB on domains of body function, activities and social participation, and quality of life persist into adulthood. Although there are some side effects of CITB therapy, both patients and their caregivers report high satisfaction.
从儿童期到成年期:持续鞘内巴氯芬治疗非活动痉挛性脑瘫的长期评估
背景关于连续鞘内巴氯芬(CITB)疗法对非行动不便的脑性麻痹(CP)患者从成长期到成年期的持久影响的了解十分有限。此外,我们还旨在通过住院率、矫形手术、与泵相关的并发症、泵补充量以及个人和护理人员的满意度来衡量 CITB 的负担。方法在 2022 年对 17 名 CP 患者(2002-2005 年植入泵)进行了前瞻性队列评估。采用视觉模拟量表(VAS)评分、儿童健康问卷家长表-50(CHQ-PF50)和李克特量表问卷。结果15人在首次随访时存活(平均年龄31.8岁)。据统计,治疗开始后 6 个月,患者在个人目标、护理难易程度和疼痛方面的 VAS 评分均有明显改善,这种改善一直持续到成年。在长期随访中,心理健康和健康变化降至基线,其他生活质量领域没有明显差异。每3.6年有一名患者因治疗而入院,其中13.2%的患者因并发症而入院。脊柱侧弯患者的人数逐年增加。尽管如此,大多数患者(80%)仍表示愿意继续接受 CITB 治疗。虽然 CITB 治疗存在一些副作用,但患者及其护理人员都表示非常满意。
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来源期刊
CiteScore
6.30
自引率
3.20%
发文量
115
审稿时长
81 days
期刊介绍: The European Journal of Paediatric Neurology is the Official Journal of the European Paediatric Neurology Society, successor to the long-established European Federation of Child Neurology Societies. Under the guidance of a prestigious International editorial board, this multi-disciplinary journal publishes exciting clinical and experimental research in this rapidly expanding field. High quality papers written by leading experts encompass all the major diseases including epilepsy, movement disorders, neuromuscular disorders, neurodegenerative disorders and intellectual disability. Other exciting highlights include articles on brain imaging and neonatal neurology, and the publication of regularly updated tables relating to the main groups of disorders.
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