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





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?”



… 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.”


Teasdale et al, AJKD © National Kidney Foundation.

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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。


– 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.


Authors:E.J.Teasdale,G。Leydon,S。Fraser,P。Roderick,M.W。Taal和S. Tonkin-Cerine

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