Division of Developmental Medicine, Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
Department of Neurology, Boston Children's Hospital, Boston, MA, USA.
J Intellect Disabil Res. 2022 Dec;66(12):952-966. doi: 10.1111/jir.12977. Epub 2022 Sep 27.
While past research has underscored the benefits of physical activity for people with Down syndrome (DS), exercise programming that is customised to and/or accessible for children and adolescents with DS is limited. The objectives of this pilot were to (1) develop and refine an engaging exercise programme for adolescents with DS, called DSFit; (2) assess feasibility over the course of two pilot iterations; and (3) examine participant and parent feedback regarding exercise priorities and the DSFit exercise programme.
Participants were 12 unique adolescents (ages 11-17 years) with DS. Both pilot iterations of the programme consisted of weekly group exercise sessions and home exercises to complete between sessions. Physical fitness and mood/behaviour were assessed at baseline and at the end of the intervention. Parent and child goal-setting and feedback surveys were collected before and immediately after the intervention, and a 2-month follow-up assessed physical activity and exercise attitudes. Quality improvement methodology and participant/parent feedback were used to modify the second iteration to better meet the needs of our study population. Changes included an expanded age range, modified physical assessments, decreased burden of questionnaires, and video-recorded group sessions for at-home practice.
Physical fitness evaluation of core/trunk strength and stability, lower- and upper-body strength, balance, flexibility, and walking was feasible, and the majority of participants in both pilot iterations improved in at least one category of physical assessment between baseline and end of intervention. Assessment of symptoms of anxiety, depression and behavioural concerns was also feasible and results showed slight improvements in some participants. Both parent and participant feedback indicated that participants enjoyed the programme and appreciated the opportunity to start developing sustainable exercise habits.
A group exercise programme with supported at-home components is feasible for adolescents with DS. Future iterations will continue to examine programme efficacy with improved fitness testing and larger sample sizes. Strategies to increase at-home compliance, such as virtual sessions and parent/guardian-guided physical fitness assessments, will also be incorporated.
虽然过去的研究强调了身体活动对唐氏综合征(DS)患者的益处,但针对 DS 儿童和青少年的定制化和/或可及性的锻炼计划有限。本研究的目的是:(1)为 DS 青少年制定并完善一项名为 DSFit 的有趣的锻炼计划;(2)通过两轮试验来评估该计划的可行性;(3)通过参与者和家长的反馈,了解他们对锻炼重点和 DSFit 锻炼计划的看法。
参与者为 12 名患有 DS 的青少年(年龄 11-17 岁)。该计划的两轮试验都包含每周的小组锻炼和课后在家完成的练习。在干预前后评估参与者的体能和情绪/行为。在干预前后,收集家长和孩子的目标设定和反馈调查,在干预结束后 2 个月,评估身体活动和锻炼态度。采用质量改进方法和参与者/家长的反馈来修改第二阶段的计划,使其更好地满足研究人群的需求。更改内容包括扩大年龄范围、修改体能评估、减少问卷负担、以及录制小组课程供在家练习。
核心/躯干力量和稳定性、上下肢力量、平衡、灵活性和行走的体能评估是可行的,两轮试验中的大多数参与者在基线和干预结束时,至少有一个体能评估类别有所改善。评估焦虑、抑郁和行为问题的症状也是可行的,结果显示部分参与者的症状略有改善。家长和参与者的反馈都表明,参与者喜欢该计划,也很珍惜有机会开始养成可持续的锻炼习惯。
对于 DS 青少年来说,具有家庭支持组件的小组锻炼计划是可行的。未来的迭代将继续通过改进的体能测试和更大的样本量来检验计划的效果。还将纳入增加家庭依从性的策略,例如虚拟课程和家长/监护人指导的体能评估。