Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, UK.
Institute of Cognitive Neuroscience, University College London, UK.
J Intellect Disabil Res. 2018 Dec;62(12):1058-1071. doi: 10.1111/jir.12472. Epub 2018 Feb 8.
Individuals with tuberous sclerosis complex (TSC) are at increased risk of developing self-injurious behaviour. The persistence of this deleterious behaviour over years is reported in aetiologically heterogeneous samples to be between 60% and 80% but is unknown for TSC.
In this study, we determined the 3-year persistence of self-injury in a sample (n = 52) of children (with and without ID) and adults (with ID) with TSC and examined characteristics associated with persistence.
Findings for self-injury were contrasted to those for aggression and property destruction to examine the specificity of results to this behaviour. Self-injury was persistent in 84.6% of those with TSC who showed this behaviour, in contrast to 66.7% both for aggression and destruction. Persistent self-injury was associated with poor self-help skills, greater overactivity/impulsivity and more behavioural indicators of pain. These latter two characteristics were also associated with persistent aggression. No characteristics were associated with persistence of property destruction.
These findings suggest that self-injurious behaviours in individuals with TSC, together with aggressive and destructive behaviours, are highly persistent and would benefit from targeted intervention. Poor adaptive skills, overactivity/impulsivity and painful health conditions may differentiate those at most risk for persistent self-injury or aggression.
结节性硬化症（TSC）患者发生自伤行为的风险增加。在病因学异质样本中，这种有害行为多年来的持续存在率报告在 60%至 80%之间，但在 TSC 中尚不清楚。
在这项研究中，我们确定了一组患有 TSC 的儿童（有或无智力障碍）和成人（有智力障碍）中自伤行为的 3 年持续性，并检查了与持续性相关的特征。
将自伤的发现与攻击和破坏财产的发现进行了对比，以检验这些结果对该行为的特异性。在表现出自伤行为的 TSC 患者中，有 84.6%的患者存在持续性自伤，而攻击性和破坏性行为的持续性分别为 66.7%。持续性自伤与较差的自助技能、更高的多动/冲动和更多的行为疼痛指标相关。后两个特征也与持续性攻击相关。没有特征与破坏性行为的持续性相关。
这些发现表明，TSC 患者的自伤行为以及攻击和破坏性行为具有高度的持续性，需要有针对性的干预。较差的适应技能、多动/冲动和疼痛的健康状况可能会区分那些最容易发生持续性自伤或攻击的患者。
