Lewin Gemma, Kousovista Rania, Abakasanga Emeka, Shivamurthy Rishika, Cosma Georgina, Jun Gyuchan, Kaur Navjot, Akbari Ashley, Gangadharan Satheesh
Leicestershire Partnership NHS Trust, Leicester, UK
Department of Computer Science, Loughborough University, Loughborough, UK.
BMJ Open. 2025 Jan 22;15(1):e090857. doi: 10.1136/bmjopen-2024-090857.
Explore the nature and prevalence of long-term conditions in individuals with intellectual disability.
Retrospective longitudinal population-based study.
Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databank.
14 323 individuals were identified during the study date period 1 January 2000 to 31 December 2021 using the following inclusion criteria: 18 or older, alive at the cohort start date, a resident of Wales, with a primary care registration at a SAIL providing general practice with available records and a recorded diagnosis of intellectual disability. Once individuals were identified, health records were observed from birth.
13 069 individuals had a recorded diagnosis of intellectual disability and at least one long-term condition, reflecting 91.25% of the population. Demographic data from the SAIL dataset reveal that the study population is predominantly White, with low levels of representation of non-White ethnic groups. In the cohort, a larger proportion of patients live in the most deprived areas of Wales (22.30%), with fewer individuals in less deprived categories. Mental illness was identified as the most prevalent of the identified long-term conditions, whereby 30.91% of the population had a recorded diagnosis of a mental illness which was chronic. For many common conditions, including epilepsy, thyroid disorders, upper gastrointestinal disorders, chronic kidney disease and diabetes, there was an overall trend of higher prevalence rates in the intellectual disability cohort when compared with the general population. The prevalence of hypertension was lower in individuals with intellectual disability. Chronic constipation, chronic diarrhoea and insomnia were examples of long-term conditions added as relevant to individuals with intellectual disability. Notable differences in the distribution of long-term conditions were observed when comparing across sex and age groups. The number of long-term conditions increases with age. Conditions which may usually be expected to emerge later in life are present in younger age groups, such as diabetes, hypertension and chronic arthritis. When hospital episodes were analysed, epilepsy, diabetes, chronic airway disease and mental illness were commonly treated conditions during hospital admission across both sexes. Conditions which were less prevalent in the intellectual disability cohort, but which were treated during ≥6% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy.
This study establishes a range of 40 relevant long-term conditions for people with intellectual disability through an iterative process, which included a review of the available literature and a series of discussions with a Professional Advisory Panel and Patient and Public Involvement groups of this research project. The findings of the study reinforce the high prevalence and early emergence of long-term conditions in the intellectual disability cohort. It also demonstrates the difference in the range of conditions when compared with the general population. There were differences in long-term conditions when separated by sex and age. Long-term conditions which commonly require treatment in hospitals were also revealed. Further work is required to translate the findings of this study into actionable insights. Clusters of multiple long-term conditions, trajectories, outcomes and risk factors should be explored to optimise the understanding and longitudinal care of individuals with intellectual disabilities and long-term conditions.
探究智力残疾个体中慢性病的性质和患病率。
基于人群的回顾性纵向研究。
利用安全匿名信息链接（SAIL）数据库获取威尔士全体人群的初级和二级医疗数据。
在2000年1月1日至2021年12月31日的研究期间，根据以下纳入标准确定了14323名个体：年龄18岁及以上，在队列起始日期时存活，威尔士居民，在提供可用记录的SAIL初级医疗登记处登记且有智力残疾的记录诊断。个体一经确定，即从出生起观察其健康记录。
13069名个体有智力残疾的记录诊断且至少有一种慢性病，占总人群的91.25%。SAIL数据集的人口统计学数据显示，研究人群主要为白人，非白人种族群体的代表性较低。在该队列中，较大比例的患者生活在威尔士最贫困地区（22.30%），贫困程度较低类别的个体较少。精神疾病被确定为已确诊的慢性病中最常见的疾病，30.91%的人群有慢性精神疾病的记录诊断。对于许多常见疾病，包括癫痫、甲状腺疾病、上消化道疾病、慢性肾病和糖尿病，与普通人群相比，智力残疾队列中的总体患病率呈上升趋势。智力残疾个体中高血压的患病率较低。慢性便秘、慢性腹泻和失眠是与智力残疾个体相关的新增慢性病例子。在比较不同性别和年龄组时，观察到慢性病分布存在显著差异。慢性病的数量随年龄增长而增加。通常预期在生命后期出现的疾病在较年轻年龄组中也存在，如糖尿病、高血压和慢性关节炎。分析住院情况时，癫痫、糖尿病、慢性气道疾病和精神疾病是两性住院期间常见的治疗疾病。在智力残疾队列中患病率较低但在总住院人数的≥6%期间接受治疗的疾病包括癌症、心律失常和脑瘫。
本研究通过一个迭代过程确定了一系列40种与智力残疾者相关的慢性病，该过程包括对现有文献的回顾以及与本研究项目的专业咨询小组、患者及公众参与小组的一系列讨论。该研究结果强化了智力残疾队列中慢性病的高患病率和早发性。它还表明与普通人群相比疾病范围存在差异。按性别和年龄划分时慢性病存在差异。还揭示了通常需要住院治疗的慢性病。需要进一步开展工作将本研究结果转化为可采取行动的见解。应探索多种慢性病的聚集情况、发展轨迹、结局和风险因素，以优化对智力残疾和慢性病个体的理解及纵向护理。
