Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease
Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease
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DOI：
10.1001/jamanetworkopen.2019.15374
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发表时间：
2019-11-01
影响因子：
13.8
通讯作者：
Lanzkron, Sophie
中科院分区：
文献类型：
--
作者：
Lubeck, Deborah;Agodoa, Irene;Lanzkron, Sophie
重要性镰状细胞病（SCD）患者的预期寿命缩短;然而，关于SCD患者终生收入的数据有限。目的估计美国SCD患者队列与年龄、性别和种族/民族匹配的非SCD患者队列之间的预期寿命、质量调整预期寿命和收入差异。队列模拟模型用于（1）建立一个普遍的SCD队列和一个匹配的非SCD队列，（2）确定质量调整预期寿命的效用权重，（3）计算平均预期年个人收入，（4）建模预期寿命，质量调整预期寿命，SCD和匹配的非SCD队列的终身收入。数据来源包括疾病控制和预防中心，国家新生儿筛查信息系统和已发表的文献。目标人群为SCD患者，时间范围为终生，视角为社会。模型数据收集时间为2017年11月29日至2018年3月21日，分析时间为2018年4月28日至12月3日。主要结果和指标预期寿命、质量调整预期寿命和预期终身收入。（95%不确定区间，79 344 - 101 398）; 998例男性和952例女性。SCD队列的预期寿命为54岁，而匹配的非SCD队列为76岁;质量调整后的预期寿命分别为33岁和67岁。患有SCD的个人的预计终生收入为1 227 000美元，而没有SCD的匹配个人的预计终生收入为1 922 000美元，反映了由于预期寿命的22年差异而损失的695 000美元的收入。研究的一个局限性是，对预期寿命的较高估计产生了对损失的寿命年数和收入的保守估计。该分析仅考虑了由于过早死亡而造成的个人收入损失的价值，而没有考虑与过度发病率相关的直接医疗成本或其他社会成本（例如，因残疾而损失的工作日，住院时间）。该模型是最敏感的收入水平和死亡率的变化。结论和相关性在这个模拟的队列建模研究，SCD的社会后果超出医疗费用的预期寿命降低，质量调整后的预期寿命，终身收入。这些结果强调了需要改善疾病的治疗，以改善与SCD相关的潜在发病率和死亡率。
IMPORTANCE Individuals with sickle cell disease (SCD) have reduced life expectancy; however, there are limited data available on lifetime income in patients with SCD.OBJECTIVE To estimate life expectancy, quality-adjusted life expectancy, and income differences between a US cohort of patients with SCD and an age-, sex-, and race/ethnicity-matched cohort without SCD.DESIGN, SETTING, AND PARTICIPANTS Cohort simulation modeling was used to (1) build a prevalent SCD cohort and a matched non-SCD cohort, (2) identify utility weights for quality-adjusted life expectancy, (3) calculate average expected annual personal income, and (4) model life expectancy, quality-adjusted life expectancy, and lifetime incomes for SCD and matched non-SCD cohorts. Data sources included the Centers for Disease Control and Prevention, National Newborn Screening Information System, and published literature. The target population was individuals with SCD, the time horizon was lifetime, and the perspective was societal. Model data were collected from November 29, 2017, to March 21, 2018, and the analysis was performed from April 28 to December 3, 2018.MAIN OUTCOMES AND MEASURES Life expectancy, quality-adjusted life expectancy, and projected lifetime income.RESULTS The estimated prevalent population for the SCD cohort was 87 328 (95% uncertainty interval, 79 344-101 398); 998 were male and 952 were female. Projected life expectancy for the SCD cohort was 54 years vs 76 years for the matched non-SCD cohort; quality-adjusted life expectancy was 33 years vs 67 years, respectively. Projected lifetime income was $1 227 000 for an individual with SCD and $1 922 000 for a matched individual without SCD, reflecting a lost income of $695 000 owing to the 22-year difference in life expectancy. One study limitation is that the higher estimates of life expectancy yielded conservative estimates of lost life-years and income. The analysis only considered the value of lost personal income owing to premature mortality and did not consider direct medical costs or other societal costs associated with excess morbidity (eg, lost workdays for disability, time spent in the hospital). The model was most sensitive to changes in income levels and mortality rates.CONCLUSIONS AND RELEVANCE In this simulated cohort modeling study, SCD had societal consequences beyond medical costs in terms of reduced life expectancy, quality-adjusted life expectancy, and lifetime earnings. These results underscore the need for disease-modifying therapies to improve the underlying morbidity and mortality associated with SCD.