The Illness Experience of Undocumented Immigrants With End-stage Renal Disease
The Illness Experience of Undocumented Immigrants With End-stage Renal Disease
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DOI：
10.1001/jamainternmed.2016.8865
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发表时间：
2017-04-01
影响因子：
39
通讯作者：
Ortega, Debora
中科院分区：
文献类型：
--
作者：
Cervantes, Lilia;Fischer, Stacy;Ortega, Debora
重要性 根据终末期肾病 (ESRD) 的诊断，将无证移民排除在医疗保险范围内进行血液透析，这要求某些州的医生使用仅限紧急的血液透析来治疗该人群的慢性疾病。仅紧急透析对于患者而言既昂贵又繁重。 目的 了解无法接受定期血液透析的患有 ESRD 的无证移民的疾病经历。设计、设置和参与者 2015 年 7 月 1 日至 12 月 31 日在科罗拉多州安全网医院进行了一项定性、半结构化访谈研究，研究对象为 20 名患有 ESRD 且无法获得血液透析的无证移民（以下简称无证患者）。安排血液透析。人口统计信息是从参与者的医疗记录中收集的。采访经过录音、翻译，然后逐字转录。 2016 年 3 月 1 日至 6 月 30 日，4 位研究团队成员使用归纳定性主题分析对访谈进行了分析。 主要结果和测量 半结构化访谈的主题和副主题。 结果 研究中纳入的所有 20 名无证患者（10 名男性和 10 名女性；平均 [SD] 年龄，51.4 [13.8] 岁）在诊断出患有以下疾病之前已在美国居住至少 5 年：终末期肾病。他们描述了以下 4 个主题：(1) 令人痛苦的症状负担和不可预测的紧急血液透析机会，(2) 与每周发生危及生命的疾病相关的死亡焦虑，(3) 接受紧急血液透析的家庭和社会后果，以及 (4) 对医疗保健系统的看法。 结论和相关性仅紧急血液透析。将患有 ESRD 的无证移民排除在定期透析之外的国家应重新考虑其政策。
IMPORTANCE The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients.OBJECTIVE To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis.DESIGN, SETTING, AND PARTICIPANTS A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants' medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016.MAIN OUTCOMES AND MEASURES Themes and subthemes from semistructured interviews.RESULTS All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system.CONCLUSIONS AND RELEVANCE Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.