治疗丙型肝炎的身体、社会和心理后果：基于社区的患者报告结局评估。
Physical, social, and psychological consequences of treatment for hepatitis C : a community-based evaluation of patient-reported outcomes.
机构信息
Kaiser Permanente Division of Research, Viral Hepatitis Registry, Oakland, CA, USA.
出版信息
Patient. 2013;6(1):23-34. doi: 10.1007/s40271-013-0005-4.
BACKGROUND
Hepatitis C virus (HCV) antiviral therapy entails a long treatment course, as well as significant side effects that can lead to medication non-adherence and premature termination of treatment. Few large studies have comprehensively examined patient perspectives on the treatment experience, particularly the social and personal effects.
OBJECTIVE
We sought to understand how a diverse group of patients' lives were affected during HCV treatment, and to obtain suggestions about how to better support patients during treatment.
METHODS
On average, 13 months after therapy we interviewed by telephone a consecutive sample of 200 patients treated for hepatitis C with ribavirin and pegylated interferon in a comprehensive, integrated health plan in the years 2008-2010. Mixed (quantitative and qualitative) survey methods were used.
RESULTS
The response rate was 68.9 %. Mean age at treatment was 51 years; 63.0 % were men; and Black, Hispanic, Asian, and White non-Hispanic racial/ethnic groups were similarly represented. Patients whose treatment was managed by nurses or clinical pharmacists (vs. physicians) were more likely to report their providers as being part of their support system (83.5 % vs. 58.9 %; p < 0.001). Most patients reported flu-like symptoms (93.5 %) and psychiatric problems (84.5 %), and 42.5 % reported side effects lasted up to 6 months after treatment. Black patients reported discontinuing treatment prematurely due to side effects more often than non-Blacks (29.4 % vs. 12.1 %; p < 0.001). Physical side effects (69.5 % of patients), psychiatric issues (43.5 %), and employment (27.4 %) were ranked among the three most difficult challenges. Patients desired help in anticipating and arranging work modifications during treatment. Most patients rated peer support, nutritional guidance, and weekly provider contact by telephone as potentially helpful resources for future patients undergoing HCV treatment.
CONCLUSIONS
Patient perspectives can help formulate and refine HCV treatment support programs. Effective support programs for diverse populations are crucial as the complexities and costs of HCV treatment increase. The call for greater support from peers, providers, and employers demands new systems such as patient-centered care teams.
背景
丙型肝炎病毒（HCV）抗病毒治疗需要一个长期的治疗过程，同时还伴随着可能导致药物不依从和提前终止治疗的显著副作用。很少有大型研究全面考察了患者对治疗体验的看法，尤其是社会和个人影响。
目的
我们旨在了解不同患者的生活在 HCV 治疗期间受到了怎样的影响，并获得关于如何在治疗期间更好地支持患者的建议。
方法
在 2008 年至 2010 年期间，我们使用混合（定量和定性）调查方法，在一个综合性、综合性健康计划中，对接受利巴韦林和聚乙二醇干扰素治疗的 200 例连续患者进行了电话访谈。这些患者在治疗结束后平均 13 个月接受了访谈。
结果
应答率为 68.9%。治疗时的平均年龄为 51 岁；63.0%为男性；黑种人、西班牙裔、亚洲人和白人非西班牙裔种族/民族群体的比例相似。治疗由护士或临床药师（而非医生）管理的患者更有可能报告其提供者是其支持系统的一部分（83.5% vs. 58.9%；p<0.001）。大多数患者报告出现流感样症状（93.5%）和精神问题（84.5%），42.5%的患者报告副作用持续到治疗结束后 6 个月。黑种人患者因副作用而提前终止治疗的比例（29.4%）高于非黑种人（12.1%）（p<0.001）。身体副作用（69.5%的患者）、精神问题（43.5%）和就业（27.4%）被列为三个最困难的挑战。患者希望在治疗期间帮助他们预测和安排工作调整。大多数患者认为同伴支持、营养指导和每周通过电话与提供者联系是未来接受 HCV 治疗的患者潜在有帮助的资源。
结论
患者观点有助于制定和完善 HCV 治疗支持计划。随着 HCV 治疗的复杂性和成本增加，针对不同人群的有效支持计划至关重要。来自同伴、提供者和雇主的更多支持的呼声要求建立新的系统，如以患者为中心的护理团队。
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