Adults with Down syndrome: a comprehensive approach to manage complexity

Adults with Down syndrome: a comprehensive approach to manage complexity
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DOI:
10.1111/jir.12588
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发表时间:
2019-06-01
影响因子:
3.6
通讯作者:
Onder, G.
Onder, G.
中科院分区:
医学3区
文献类型:
--
作者:
Carfi, A.;Vetrano, D. L.;Onder, G.

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背景唐氏综合征(DS)的特征是影响选定器官系统的过早衰老,患有这种疾病的人可以表现出在没有DS的老年人群中经常观察到的合并症和缺陷模式。然而,关于成年DS患者特征的信息有限。本研究的目的是描述使用标准化综合评估工具收集的DS成人的特征。方法横断面研究。来自3个国家(意大利,n = 95;美国,n = 175;加拿大,n = 160)的430例DS成人(年龄范围18/75岁)。使用标准化评估工具(interRAI智力残疾)评估样本特征。结果平均年龄范围为35.2(标准差12.0)年,在美国样本的48.8(标准差9.0)年,在加拿大样本。意大利和美国样本中的大多数参与者都住在私人住宅中,而加拿大样本中超过一半的参与者都住在机构中。研究样本中老年病的患病率很高,包括认知缺陷、日常生活中的常见活动障碍、戒断症状或快感缺乏、攻击性行为、沟通问题、福尔斯和听力问题。还经常观察到胃肠道症状、皮肤和牙齿问题以及肥胖。结论成人DS呈现出高度的复杂性,这可能表明需要一种基于全面评估和管理的方法,可以提供足够的护理。需要进一步的研究来更好地了解这种方法在DS人群中的有效性。
Background Down syndrome (DS) is characterised by premature ageing that affects selected organ systems, and persons with this condition can present patterns of co-morbidities and deficits often observed in the older population without DS. However, information on the characteristics of adult persons with DS is limited. The objective of the study is to describe characteristics of adults with DS collected with a standardised, comprehensive assessment instrument. Methods Cross-sectional study. Four hundred thirty adults with DS (age range 18/75 years) from three countries (Italy, n = 95; USA, n = 175; and Canada, n = 160). A standardised assessment instrument (interRAI intellectual disability) was used to assess sample characteristics. Results Mean age ranged from 35.2 (standard deviation 12.0) years in the US sample to 48.8 (standard deviation 9.0) years in the Canadian sample. Most participants in the Italian and US sample were living in private homes, while more than half of those in the Canadian sample were institutionalised. Prevalences of geriatric conditions, including cognitive deficits, disability in the common activities of daily living, symptoms of withdrawal or anhedonia, aggressive behaviour, communication problems, falls and hearing problems were high in the study sample. Gastrointestinal symptoms, skin and dental problems and obesity were also frequently observed. Conclusions Adults with DS present with a high level of complexity, which may suggest the need for an approach based on a comprehensive assessment and management that can provide adequate care. Further research is needed to understand better the effectiveness of such an approach in the DS population.