Department of Health Sciences, Faculty of Medicine, Lund University, Box 157, 221 00, Huddinge, Sweden.
EPI@LUND (Epidemiology, Population studies, and Infrastructures at Lund University), Lund University, 221 00, Stockholm, Sweden.
BMC Health Serv Res. 2020 Oct 15;20(1):949. doi: 10.1186/s12913-020-05800-7.
Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS.
This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002-2012.
A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia.
Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.
自 25 年前以来，针对唐氏综合征患者（DS）的健康监测已经存在具体的医疗指南，但人们对这些指南的遵循情况知之甚少。制定这些指南是为了避免因可预防的疾病而遭受不必要的痛苦。本研究的目的是调查 1）在特定医疗指南中描述的合并症方面计划的医疗保健就诊次数，作为遵循情况的衡量标准，2）未计划的医疗保健就诊次数，作为潜在未满足的医疗保健需求的衡量标准，以及 3）DS 老年人群中医疗保健利用的性别差异。
这项基于登记的研究包括来自瑞典全国智力残疾队列（n=7936）中年龄在 55 岁或以上且至少根据残疾法获得一项支持的 472 名 DS 患者。2002-2012 年，从国家患者登记处收集了住院和门诊专科医疗保健使用情况的数据。
在 11 年期间共记录了 3854 次住院和门诊专科医疗保健就诊，其中 54.6%（n=2103）为计划就诊，44.0%（n=1695）为非计划就诊，1.4%（n=56）信息缺失。超过一半的就诊是门诊保健（n=2582），因此住院保健为 33%（n=1272）。大多数计划就诊（29.4%，n=618）是眼科诊所，大多数非计划就诊是内科诊所（36.6%，n=621）。计划就诊的最常见原因是白内障，在该队列中至少有 32.8%的人发现了白内障，其次是骨关节炎（8.9%）、癫痫（8.9%）和痴呆（6.6%）。肺炎、疼痛、骨折和癫痫分别至少占四分之一的人群（27.1%、26.9%、26.3%和 19.7%）各有一次非计划就诊。男性和女性的非计划就诊次数相似。然而，女性更有可能因癫痫或骨折就诊，而男性更有可能因肺炎就诊。
提高对唐氏综合征患者现有特定医疗指南的认识对预防措施至关重要。根据医疗指南，计划的医疗保健就诊次数相对较少，而由潜在可预防疾病引起的非计划就诊次数较高，这表明需要更好地遵循医疗指南。
