Background

Kidney disease has historically been the primary source of early mortality in adults with tuberous sclerosis complex (TSC). Kidney imaging surveillance promotes early detection of lesions requiring intervention. We describe kidney imaging frequency in relationship to patient-level characteristics for commercially insured patients with TSC in the United States.

Methods

This retrospective observational study used 2003 to 2016 enrollment and claims data from a de-identified fully insured commercial health insurer. Patients with TSC less than 65 years were included. The patient-level kidney imaging rate was calculated as the number of kidney imaging procedures divided by length of continuous enrollment. A multiple linear regression model was used to determine the relationship between imaging rate and progression of TSC-associated kidney disease, number of specialists seen, and nephrologist care.

Results

At least half of the 70 patients with TSC included in the study were aged 16 years or younger. Over a follow-up period of up to 14 years, the median kidney imaging rate was 0.13 procedures per year with 43% (N = 30) of patients lacking evidence of kidney imaging during the observation period. Imaging frequency increased with progression of TSC-associated kidney disease, more specialists, and nephrologist care (P < 0.05 for all three in regression model).

Conclusions

A substantial percentage of patients with TSC in the United States are at risk for delayed detection of kidney manifestations due to infrequent kidney imaging surveillance. Multispecialty care, including neurologists, may positively affect kidney surveillance rates.

中文翻译：

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商业保险结节性硬化症患者的肾脏影像监测

背景

肾脏疾病历来是结节性硬化症 (TSC) 成人早期死亡的主要来源。肾脏影像监测有助于早期发现需要干预的病变。我们描述了与美国 TSC 商业保险患者的患者水平特征相关的肾脏成像频率。

方法

这项回顾性观察研究使用了 2003 年至 2016 年的注册和索赔数据，这些数据来自一家去识别的完全投保的商业健康保险公司。纳入 TSC 小于 65 岁的患者。患者水平的肾脏成像率计算为肾脏成像程序的数量除以连续登记的长度。使用多元线性回归模型来确定成像率与 TSC 相关肾脏疾病进展、所见专科医生人数和肾科医生护理之间的关系。

结果

纳入研究的 70 名 TSC 患者中至少有一半年龄在 16 岁或以下。在长达 14 年的随访期间，中位肾脏影像学检查率为每年 0.13 次，其中 43%（N = 30）的患者在观察期间缺乏肾脏影像学证据。成像频率随着 TSC 相关肾脏疾病的进展、更多专家和肾内科医生的护理而增加（ 回归模型中所有三者的P < 0.05）。

结论

由于不频繁的肾脏影像监测，美国相当大比例的 TSC 患者存在延迟发现肾脏表现的风险。包括神经科医生在内的多专科护理可能会对肾脏监测率产生积极影响。