定性研究在肾脏疾病中的持续重要性

定性数据越来越多地用于说明透析依赖性肾脏疾病患者的疾病经历。例子包括详细介绍患者对保守管理,经验等待移植,以及困难药物依从性. Fewer studies have focused on patients with pre-dialysis kidney disease, particularly with regards to their experiences adjusting to an often poorly-understood illness.

In a recent meta-ethnographic review published inajkd,Teasdale等summarized and interpreted existing qualitative studies which outlined patients’ experiences after having received a diagnosis of chronic kidney disease (CKD). Their final analysis included ten studies from seven countries and collectively represented the knowledge, attitudes, and beliefs of 596 patients.

Key themes identified by the authors and potential areas for future research are discussed below:

A challenging diagnosis

“如果我有肾脏问题,我应该有迹象告诉我事情不对。”

在没有任何麻烦的情况下,有几名患者在接受新的慢性疾病的新诊断方面表现出令人震惊和沮丧。还表达了对疾病的永久性和潜在可逆性的担忧。

关于疾病因果关系的多种信念

…如果有人有肾脏问题,那就是他“被抓”……像黑魔法一样。”

Teasdale等suggest that patients may have beliefs on disease causation that are unique to their culture or socioeconomic strata. An Australian aboriginal woman’s viewpoint, demonstrated above, stood in contrast with the beliefs expressed by participants from less marginalized groups. Those individuals seemed to blame their diagnosis on personal bad habits, such as stressful lifestyles or increased alcohol use. Others pointed to hereditary causes, mentioning a parent with diabetes as the inciting factor.

Diverse beliefs on disease progression

“…in three or four years I won’t be able to work… won’t be any money to pay for this and that. Who’s going to drive me?”

患者感叹患有慢性病的社会和经济负担。担忧包括对财务独立性的渴望,有能力进行身体工作的需求以及对另一种重大的感知疾病负担。一些患者将这些担忧引起了激励力量,并能够采取越来越健康的行为。其他人则认为复杂的药物治疗方案,合并状况以及年龄不断发展,这是采用健康生活方式变化以阻止疾病进展的障碍。

未满足的信息需求

… information should be offered in the beginning, it shouldn’t be withheld… it’s much harsher to find it out in the end.”

有些病人觉得医生intentionally withholding information. Several expressed a desire for their physicians to provide more practical CKD management advice using clear, disease-specific terms, educational materials, and peer support groups.

Unmet psychosocial needs and coping strategies

“I felt trapped, I can’t go out anymore, I used to like going out, travelling, fishing, but I can’t do that anymore, I just don’t feel like it.”

在CKD的更高级阶段,患者对自己的自由和社会活动表示了重大限制。具体的挫败感包括疲劳,感觉依赖他人以及难以维持社交外观。患者还强调了应对机制,例如拥有社会支持和培养社区感,这是具有可接受的生活质量的关键因素。为了重新获得某种控制感,还认为有必要在情感上适应“新常态”的能力。

Teasdale et al, AJKD © National Kidney Foundation.

" data-medium-file="//www.svt123.com/wp-content/uploads/2017/10/gr3_lrg.jpg" data-large-file="//www.svt123.com/wp-content/uploads/2017/10/gr3_lrg.jpg" loading="lazy" class="size-large wp-image-14925 jetpack-lazy-image" src="//www.svt123.com/wp-content/uploads/2017/10/gr3_lrg.jpg?w=620" alt width="620" height="689" data-lazy-src="//www.svt123.com/wp-content/uploads/2017/10/gr3_lrg.jpg?w=620&is-pending-load=1" srcset="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7">

关键主题和子主题。箭头表明作者对患者如何在理解阶段和适应CKD的阶段移动的解释。图3来自Teasdale等,ajkd©国家肾脏基金会。

Teasdale等highlighted the need for further research into the psychosocial aspects of advancing CKD, including longitudinal studies of patients’ evolving needs. Additionally, as the authors thoughtfully pointed out, much of the existing qualitative literature treats CKD as a single entity, when other co-existing illnesses must also have effects on a patient’s quality of life. As many of the participants in the studies included lived in high-income countries, future studies should attempt to elicit perceptions of low-income patients.

This review is also unique in that despite the heterogeneity of studies it includes, it provides some evidence that patients may have stage-specific concerns as they navigate the process of living with CKD. Though these needs undoubtedly overlap, it seems that during earlier stages of CKD, patients lack awareness about their disease, have culture-specific beliefs about causation, and worry about disease progression. Further along their disease course, patients struggle with the psychosocial stress of having a chronic, progressive illness and attempt to adopt various coping mechanisms.

这样的研究对我们作为提供者有什么影响?对我来说,他们强调了医生必须认识到这些主题之间存在的复杂,相互关联的关系及其对患者医疗决策的潜在影响。为了帮助解决这些问题,现有的努力增加危险人群的筛查应该继续实施。Educational materialsthat are appropriate to patients’ literacy level should continue to be used and further developed.对文化敏感的工具为了制定应对策略并减轻需要制定高级CKD患者的社会心理压力。继续解决这些问题将有助于促进高质量,清晰和有效的患者沟通。这种干预措施还具有管理可能在透析方式之间选择,在不同类型的访问中选择或选择保守管理的冲突。

患者报告的结果指标(舞会)越来越多地被认为是肾脏科临床研究的关键组成部分。由于定性分析具有提供丰富的以患者为中心的数据的能力,因此它们可能有助于确定肾脏疾病患者疾病经历的其他因素,从而为未来的研究努力提供了信息。

– Post written byDevika Nair(@devimol),AJKDBLOG客人贡献者和肾脏科研究员atVUMC,提供支持Beatrice Concepcion,AJKD社交媒体顾问委员会成员.

查看Teasdale等文章抽象的或者full-text(需要订阅),请访问ajkd.org.

Title:CKD诊断后患者的经历:一项荟萃术研究和系统评价
Authors:E.J.Teasdale,G。Leydon,S。Fraser,P。Roderick,M.W。Taal和S. Tonkin-Cerine
doi:10.1053/j.ajkd.2017.05.019

Leave a Reply

%d这样的博客作者:
Baidu