School of Nursing, Zhejiang Chinese Medical University, Hangzhou, Zhejiang Province, China.
PLoS One. 2024 Oct 17;19(10):e0311798. doi: 10.1371/journal.pone.0311798. eCollection 2024.
The systematic evaluation of relevant qualitative studies on the experiences of patients with ankylosing spondylitis provides a foundation for the clinical development of personalized disease management programs for this patient category.
Multiple databases, including PubMed, Web of Science, Embase, Cochrane Library, CINAHL, Scopus, CNKI, Wanfang, CBM, and VIP, were searched for qualitative research literature on the experiences of patients with ankylosing spondylitis from the inception of databases to March 2024. Eligible studies were included, and quality was assessed using the quality evaluation standard of qualitative research at the Joanna Briggs Institute (JBI), Australia (2016). The results were integrated using the meta-aggregation approach.
A total of 11 papers were included in the review. Four themes and 10 subthemes were synthesized: (1) difficulties in diagnosis and treatment; (2) effects of disease symptoms; (3) maladjustment of social roles; and (4) lack of support for disease response.
Medical staff should leverage the advantages of the Internet to enhance knowledge and education on ankylosing spondylitis. They should focus on patients' mental health, assist in active self-management, provide personalized interventions, promote recovery, and improve the quality of life for patients. Additionally, society should offer a diverse range of support.
系统评价强直性脊柱炎患者体验的相关定性研究，为这一患者群体的个性化疾病管理方案的临床发展提供基础。
从各数据库建立至 2024 年 3 月，检索 PubMed、Web of Science、Embase、Cochrane Library、CINAHL、Scopus、CNKI、万方、CBM 和 VIP 等多个数据库中关于强直性脊柱炎患者体验的定性研究文献。纳入合格研究，并使用澳大利亚 Joanna Briggs 研究所（JBI）的定性研究质量评价标准（2016 年）进行质量评估。使用荟萃综合方法对结果进行整合。
共纳入 11 篇文献进行综述。综合出 4 个主题和 10 个亚主题：（1）诊断和治疗困难；（2）疾病症状的影响；（3）社会角色失调；（4）疾病应对支持不足。
医务人员应利用互联网的优势，加强对强直性脊柱炎的知识和教育。应关注患者的心理健康，协助积极的自我管理，提供个性化干预，促进康复，提高患者的生活质量。此外，社会应提供多样化的支持。
