Spanish Centre for Pharmacoepidemiologic Research (CEIFE), Almirante 28, Madrid 28004, Spain.
Spanish Centre for Pharmacoepidemiologic Research (CEIFE), Almirante 28, Madrid 28004, Spain; Andalusian Bioinformatics Research Centre (CAEBi), Seville, Spain; Pharmacoepidemiology Research Group, Institute for Health Research IRYCIS, Madrid, Spain.
Semin Arthritis Rheum. 2019 Aug;49(1):105-111. doi: 10.1016/j.semarthrit.2018.11.002. Epub 2018 Nov 10.
To estimate the contemporary epidemiology of systemic sclerosis (SSc) in the UK and to explore the validity of using The Health Improvement Network (THIN) primary care database to study SSc.
4,520,299 individuals (2000-2012) aged 1-99 years were followed to identify potential incident cases of SSc; potential prevalent cases were identified at start of follow-up. Patient profiles, including free-text comments, were manually reviewed to verify cases of SSc, and case validation was undertaken for a sample (n = 100) using questionnaires to primary care physicians. Incidence, prevalence and mortality rates were calculated.
Following manual review, we identified 1321 cases of SSc (689 incident and 632 prevalent) over a mean follow-up of 7.6 years; mean age at diagnosis 59.1 years. Using information from 91/100 valid questionnaires returned, the positive predictive value of SSc diagnoses in THIN following manual review was 94%. Incidence rates of SSc per 100,000 person-years (95% CI) were 2.02 (1.87-2.17) overall, [3.36 (3.09-3.64) in females, 0.61 (0.49-0.74) in males], ranging from 1.53 (1.11-2.06) to 2.56 (1.78-3.56) across calendar years. Prevalence of SSc per 100,000 (95% CI) increased from 17.13 (14.97-19.51) to 25.38 (23.68-27.16) over the study period, and was higher in females. Using Poisson regression, the adjusted mortality rate ratio was 2.82 (95% CI: 2.55-3.13) among SSc cases versus the general population.
THIN enables precise and valid estimates of SSc occurrence to be determined. The observed increase in SSc prevalence has not been driven by increasing incidence.
评估英国系统性硬化症（SSc）的当代流行病学，并探讨使用健康改善网络（THIN）初级保健数据库研究 SSc 的有效性。
对 4520299 名年龄在 1 至 99 岁的个体（2000-2012 年）进行随访，以确定潜在的 SSc 发病病例；在随访开始时确定潜在的现患病例。通过手工审查患者资料，包括自由文本注释，来验证 SSc 病例，并对 100 例样本进行病例验证，通过向初级保健医生发放问卷来进行。计算发病率、患病率和死亡率。
经过手工审查，我们在平均 7.6 年的随访中确定了 1321 例 SSc（689 例新发和 632 例现患）；诊断时的平均年龄为 59.1 岁。使用 100 份有效问卷中的 91 份返回的信息，THIN 中经过手工审查的 SSc 诊断的阳性预测值为 94%。每 100000 人年的 SSc 发病率（95%CI）为 2.02（1.87-2.17），[女性为 3.36（3.09-3.64），男性为 0.61（0.49-0.74）]，在整个日历年内从 1.53（1.11-2.06）到 2.56（1.78-3.56）不等。SSc 的患病率每 100000 人（95%CI）从研究期间的 17.13（14.97-19.51）增加到 25.38（23.68-27.16），女性中更高。使用泊松回归，SSc 病例与普通人群相比，调整后的死亡率比为 2.82（95%CI：2.55-3.13）。
THIN 可以精确和有效地确定 SSc 发病的情况。观察到的 SSc 患病率增加并非由发病率增加所致。
