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“为了适应新的身体限制,我的生活不得不做出诸多改变”:患有多种疾病的患者对其最困扰的慢性病的描述。

"I had to change so much in my life to live with my new limitations": Multimorbid patients' descriptions of their most bothersome chronic conditions.

作者信息

Slightam Cindie A, Brandt Kirsten, Jenchura Emily C, Lewis Eleanor T, Asch Steven M, Zulman Donna M

机构信息

1 Center for Innovation to Implementation (Ci2i), VA Palo Alto Health Care System, USA.

2 Division of General Medical Disciplines, Stanford University, USA.

出版信息

Chronic Illn. 2018 Mar;14(1):13-24. doi: 10.1177/1742395317699448. Epub 2017 Apr 27.

Abstract

Objective To characterize diseases that are described as most bothersome by individuals with multiple chronic conditions and to identify themes that characterize their experiences with their most bothersome condition. Methods In a survey of patients at an academic center and a Veterans Affairs hospital, we asked individuals with multiple chronic conditions to identify their most bothersome chronic condition and describe why it is challenging. Standard content analysis methods were used to code responses and identify themes reflecting characteristics of most bothersome conditions. Results The most commonly cited bothersome conditions were chronic pain (52%), diabetes (43%), post-traumatic stress disorder (25%), heart failure (24%), and lung problems (20%). Conditions were described as most bothersome due to: (a) impact on function and quality of life (e.g. active symptoms, activity limitations), (b) health consequences or sequelae (e.g. risk of complications), and (c) challenges associated with treatment or self-management. Patterns of theme dominance varied for conditions with different characteristics. Discussion The conditions that patients with multiple chronic conditions identify as most bothersome vary depending on individuals' diseases and their health-related preferences and priorities. Ascertaining patients' most bothersome conditions and associated challenges, stress, and frustrations may help ensure that management decisions are aligned with patient preferences and priorities.

摘要

目的 描述患有多种慢性病的个体认为最困扰的疾病,并确定能够体现他们在最困扰疾病方面经历的主题。方法 在对一所学术中心和一家退伍军人事务医院的患者进行的调查中,我们要求患有多种慢性病的个体确定他们最困扰的慢性病,并描述其具有挑战性的原因。使用标准的内容分析方法对回答进行编码,并确定反映最困扰疾病特征的主题。结果 最常被提及的困扰疾病是慢性疼痛(52%)、糖尿病(43%)、创伤后应激障碍(25%)、心力衰竭(24%)和肺部问题(20%)。这些疾病被描述为最困扰是由于:(a)对功能和生活质量的影响(如活跃症状、活动受限),(b)健康后果或后遗症(如并发症风险),以及(c)与治疗或自我管理相关的挑战。不同特征疾病的主题主导模式有所不同。讨论 患有多种慢性病的患者认为最困扰的疾病因个体的疾病以及他们与健康相关的偏好和优先事项而异。确定患者最困扰的疾病以及相关的挑战、压力和挫折感,可能有助于确保管理决策与患者的偏好和优先事项相一致。

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