Prevalence of adult Huntington's disease in the UK based on diagnoses recorded in general practice records.
Prevalence of adult Huntington's disease in the UK based on diagnoses recorded in general practice records.
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DOI：
10.1136/jnnp-2012-304636
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发表时间：
2013-10
期刊：
影响因子：
--
通讯作者：
Smeeth L
中科院分区：
文献类型：
--
作者：
Evans SJ;Douglas I;Rawlins MD;Wexler NS;Tabrizi SJ;Smeeth L
亨廷顿舞蹈病（HD）在英国的患病率尚不确定。最近，有人认为患病率可能比以前报道的要高得多。本研究利用来自初级保健的数据，估计英国诊断为HD的成年人的总体患病率。年龄在21岁或以上的HD患者的电子医疗记录从英国的一般实践研究数据库中检索。根据1990年至2010年期间每年7月1日确诊为HD的人数估计患病率。这个数字除以同日登记参加全科医生的总人数。这些数据也被用来估计特定年龄的患病率和英国不同地区的患病率。共有1136名诊断为HD的患者，年龄在21岁或以上，从数据库中确定。估计患病率（每10万人表示）从1990年的5.4 （95% CI 3.8至7.5）上升到2010年的12.3 （95% CI 11.2至13.5）。虽然在每个年龄组中都观察到患病率增加，但最明显的是老年患者。年龄特异性患病率在51-60岁年龄段最高（15.8 95% CI 9.0 ~ 22.3）。成人HD患病率在伦敦地区最低（5.4 (95% CI 3.0至8.9)），在英格兰东北部最高（18.3 (95% CI 8.6至34.6)），苏格兰最高（16.1 (95% CI 10.8至22.9)）。在英国，诊断为HD的患病率明显高于之前的研究结果。据推测，整个英国21岁及以上的HD患者超过5700人。从1990年到2010年，HD患者数量惊人地翻了一番。许多因素可能导致了这一增长，包括更准确的诊断，更好和更有效的治疗方法，以及预期寿命的延长，即使是HD。人们似乎也更愿意在患者的电子医疗记录中登记HD的诊断。如此高的艾滋病患病率需要更多的独创性和响应性。如何适当照顾和回应如此多的个人和家庭，以应付急迫的HD需要我们最大的决心和想象力。
The prevalence of Huntington's disease (HD) in the UK is uncertain. Recently, it has been suggested that the prevalence may be substantially greater than previously reported. This study was undertaken to estimate the overall UK prevalence in adults diagnosed with HD, using data from primary care. The electronic medical records of patients aged 21 years or more, with recorded diagnoses of HD, were retrieved from the UK's General Practice Research Database. Prevalence was estimated from the number of persons with recorded diagnoses of HD, on 1 July each year, between 1990 and 2010. This number was divided by the total number of persons registered with participating general practices on that same date. These data were also used to estimate both age specific prevalence and prevalence in various regions of the UK. A total of 1136 patients diagnosed with HD, aged 21 years or more, were identified from the database. The estimated prevalence (expressed per 100 000 population) rose from 5.4 (95% CI 3.8 to 7.5) in 1990 to 12.3 (95% CI 11.2 to 13.5) in 2010. Although an increased prevalence was observed within every age group, the most dramatic was in older patients. Age specific prevalence was highest in the 51–60 year age range (15.8 95% CI 9.0 to 22.3). The prevalence of adult HD was lowest in the London region (5.4 (95% CI 3.0 to 8.9)) and highest in the North East of England (18.3 (95% CI 8.6 to 34.6)) and Scotland (16.1 (95% CI 10.8 to 22.9)). The prevalence of diagnosed HD is clearly substantially higher in the UK than suggested from previous studies. By extrapolation to the UK as a whole, it is estimated that there are more than 5700 people, aged 21 years or more, with HD. There has also been a surprising doubling of the HD population between 1990 and 2010. Many factors may have caused this increase, including more accurate diagnoses, better and more available therapies and an improved life expectancy, even with HD. There also appears to be a greater willingness to register a diagnosis of HD in patients’ electronic medical records. Such a high prevalence of HD requires more ingenuity and responsiveness in its care. How to appropriately care for, and respond to, so many individuals and families coping with the exigencies of HD demands our greatest resolve and imagination.
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影响因子：
64.8
作者：
GUSELLA, JF;WEXLER, NS;MARTIN, JB
通讯作者：
MARTIN, JB
影响因子：
3.4
作者：
Herrett, Emily;Thomas, Sara L.;Hall, Andrew J.
通讯作者：
Hall, Andrew J.
影响因子：
2.9
作者：
Douglas, Ian;Evans, Stephen;Wexler, Nancy S.
通讯作者：
Wexler, Nancy S.
影响因子：
5.7
作者：
Sackley, Catherine;Hoppitt, Thomas J.;Pall, Hardev
通讯作者：
Pall, Hardev
影响因子：
2.8
作者：
Wild, E J;Tabrizi, S J
通讯作者：
Tabrizi, S J