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疾病周期性对生活质量损害的影响——一项混合方法解释性研究。

Impact of disease cyclicity on quality-of-life impairment-A mixed method explanatory study.

作者信息

Cheung Ying Shan, Tham Zhi Wen Winston, Chundayil Ashvin R, Phan Phillip, Choi Ci-En Ellie

机构信息

Division of Dermatology, Department of Medicine, National University Healthcare System, Singapore.

School of Medicine, University College London (UCL), London, United Kingdom.

出版信息

JAAD Int. 2024 Nov 9;18:180-187. doi: 10.1016/j.jdin.2024.09.007. eCollection 2025 Feb.

Abstract

BACKGROUND

Disease cyclicity, a composite measure of unpredictable and daily fluctuations of symptoms, strongly predicts quality-of-life (QoL) impairment.

OBJECTIVE

To explore the mechanisms by which cyclicity impacts QoL.

METHODS

1:1 semi-structured interviews were conducted and qualitatively analyzed using grounded theory. Common themes were identified and used to derive a theoretical framework.

RESULTS

Twenty-three adults, (median age 28.5, range 20-72) with a range of chronic inflammatory diseases including eczema, psoriasis, and inflammatory arthritis were prospectively recruited. Cyclicity, characterized by unpredictability, uncontrollability, and lability, contributed to a varying productivity and inconsistent ability in performing daily activities. Challenges intensified if external expectations of the patient were inconsistent with their fluctuating ability. Coping abilities, shaped by internal and external factors, moderated the relationship between cyclicity and QoL impairment.

LIMITATIONS

Qualitative interviews assume patients have accurate insights into their own behaviors. The generalizability of findings may be limited in other populations.

CONCLUSION

Disease cyclicity defines many inflammatory diseases. This study provides a theoretical framework for understanding and managing the challenges patients with a cyclical condition face.

摘要

背景

疾病周期性是症状不可预测的每日波动的综合指标,能有力预测生活质量(QoL)受损情况。

目的

探讨周期性影响生活质量的机制。

方法

进行1:1半结构化访谈,并采用扎根理论进行定性分析。确定共同主题并用于推导理论框架。

结果

前瞻性招募了23名患有多种慢性炎症性疾病(包括湿疹、银屑病和炎性关节炎)的成年人(中位年龄28.5岁,范围20 - 72岁)。以不可预测性、不可控性和易变性为特征的周期性导致了不同的生产力以及进行日常活动的能力不一致。如果患者的外部期望与他们波动的能力不一致,挑战就会加剧。由内部和外部因素塑造的应对能力调节了周期性与生活质量受损之间的关系。

局限性

定性访谈假设患者对自己的行为有准确的洞察力。研究结果在其他人群中的普遍性可能有限。

结论

疾病周期性定义了许多炎症性疾病。本研究为理解和应对周期性疾病患者所面临的挑战提供了一个理论框架。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/38a5/11751501/670d99bf83ab/gr1.jpg

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