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了解系统性硬化症患者的精神健康状况及其对疾病的影响:一项范围综述。

Understanding spiritual well-being in patients with systemic sclerosis and its effect on the illness: a scoping review.

作者信息

Gkountinaki Stella, Protopapa Foula, Syal Amit, Chatzittofis Andreas, Parperis Konstantinos, Derk Chris T

机构信息

University of Cyprus Medical School, Nicosia, Cyprus.

European University of Cyprus School of Medicine, Nicosia, Cyprus.

出版信息

Clin Rheumatol. 2025 Sep 17. doi: 10.1007/s10067-025-07689-1.

DOI:10.1007/s10067-025-07689-1
PMID:40960582
Abstract

BACKGROUND

Spirituality has become an increasingly important domain of care in chronic diseases, yet little is known about its impact in systemic sclerosis (SSc), a rare autoimmune condition associated with high psychosocial burden. Understanding the spiritual well-being of these patients may offer important insights into coping, quality of life, and patient-centered interventions.

METHODS

This scoping review followed PRISMA guidelines and included a comprehensive search of five databases for studies addressing spirituality in patients with SSc. We extracted demographic and methodological details from each study and assessed quality using the Joanna Briggs Institute (JBI) criteria.

RESULTS

Ten studies met inclusion criteria. Spirituality was frequently associated with improved psychological outcomes, including reduced depression and anxiety, increased life satisfaction, and greater resilience. Instruments used to assess spirituality included FACIT-Sp, MI-RSWB, and STS, among others. However, heterogeneity in methodology and limited focus on SSc-specific populations remain notable.

CONCLUSION

Spiritual well-being plays a significant role in the lived experience of patients with SSc. Future studies should standardize measurement tools and examine culturally sensitive, spirituality-integrated interventions. Incorporating spiritual assessment into rheumatologic care may enhance patient outcomes. Key Points •Spiritual well-being is increasingly recognized as a critical domain of health in patients with chronic illnesses, including systemic sclerosis. •Spirituality is a relevant and influential factor in the lived experience of SSc. It affects not only how patients understand and cope with their illness but also how they engage with healthcare systems. •Spirituality was frequently associated with improved psychological outcomes, including reduced depression and anxiety, increased life satisfaction, and greater resilience.

摘要

背景

在慢性病护理中,精神层面已成为一个日益重要的领域,但对于其在系统性硬化症(SSc)中的影响却知之甚少,SSc是一种罕见的自身免疫性疾病,伴有较高的心理社会负担。了解这些患者的精神健康状况可能为应对策略、生活质量及以患者为中心的干预措施提供重要见解。

方法

本范围综述遵循PRISMA指南,全面检索了五个数据库,以查找关于SSc患者精神层面的研究。我们从每项研究中提取了人口统计学和方法学细节,并使用乔安娜·布里格斯研究所(JBI)标准评估质量。

结果

十项研究符合纳入标准。精神层面常与心理状况改善相关,包括抑郁和焦虑减轻、生活满意度提高以及更强的恢复力。用于评估精神层面的工具包括FACIT-Sp、MI-RSWB和STS等。然而,方法学的异质性以及对SSc特定人群的关注有限仍然很显著。

结论

精神健康在SSc患者的生活经历中起着重要作用。未来的研究应规范测量工具,并研究具有文化敏感性、整合精神层面的干预措施。将精神评估纳入风湿病护理可能会改善患者的预后。要点:•精神健康日益被视为包括系统性硬化症在内的慢性病患者健康的关键领域。•精神层面是SSc患者生活经历中的一个相关且有影响力的因素。它不仅影响患者对疾病的理解和应对方式,还影响他们与医疗保健系统的互动方式。•精神层面常与心理状况改善相关,包括抑郁和焦虑减轻、生活满意度提高以及更强的恢复力。

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本文引用的文献

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The Effect of Medication Adherence and Spirituality in Quality of Life of Patients with Rheumatic Diseases.药物依从性和精神性对风湿性疾病患者生活质量的影响。
Healthcare (Basel). 2025 Feb 18;13(4):436. doi: 10.3390/healthcare13040436.
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The relationship between spiritual health, quality of life, stress, anxiety and depression in working women.工作女性的精神健康、生活质量、压力、焦虑和抑郁之间的关系。
Front Public Health. 2024 Aug 29;12:1366230. doi: 10.3389/fpubh.2024.1366230. eCollection 2024.
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Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study.
系统性硬化症患者自确诊以来不同时间点的支持与信息需求:一项横断面研究。
J Scleroderma Relat Disord. 2023 Oct;8(3):247-252. doi: 10.1177/23971983231181726. Epub 2023 Jun 21.
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Resilience and spirituality mediate anxiety and life satisfaction in chronically Ill older adults.韧性和灵性可以调节慢性疾病老年患者的焦虑和生活满意度。
BMC Psychol. 2023 Aug 31;11(1):256. doi: 10.1186/s40359-023-01279-z.
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Factors associated with life satisfaction in systemic sclerosis: Examining the moderating roles of social support and spiritual well-being.系统性硬化症患者生活满意度的相关因素:探讨社会支持和精神幸福感的调节作用。
J Scleroderma Relat Disord. 2023 Jun;8(2):107-112. doi: 10.1177/23971983221146366. Epub 2023 Feb 8.
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Palliative Care Is Proven.姑息治疗已被证实有效。
J Palliat Med. 2023 Jan;26(1):2-4. doi: 10.1089/jpm.2022.0568.
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Etiology unknown: Qualitative analysis of patient attributions of causality in scleroderma.病因不明:硬皮病患者因果归因的定性分析
J Scleroderma Relat Disord. 2018 Jun;3(2):182-188. doi: 10.1177/2397198318761480. Epub 2018 Mar 19.
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The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.PRISMA 2020 声明:系统评价报告的更新指南。
BMJ. 2021 Mar 29;372:n71. doi: 10.1136/bmj.n71.
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Positive Psychological Factors Are Associated With Better Spiritual Well-Being and Lower Distress in Individuals With Skin Diseases.积极的心理因素与皮肤病患者更好的精神健康和更低的痛苦程度相关。
Front Psychol. 2020 Oct 6;11:552764. doi: 10.3389/fpsyg.2020.552764. eCollection 2020.
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Interconnections: Spirituality, Spiritual Care, and Patient-Centered Care.相互联系:灵性、灵性照护与以患者为中心的照护。
Asia Pac J Oncol Nurs. 2019 Apr-Jun;6(2):104-110. doi: 10.4103/apjon.apjon_48_18.