重度生物制剂治疗的慢性鼻窦炎伴鼻息肉患者的真实体验与生活质量：一项诠释现象学研究
Lived experiences and quality of life in people with severe, biologic-treated chronic rhinosinusitis with nasal polyps: a hermeneutic phenomenological study.
文献信息
| PMID | 42966806 |
|---|---|
| 原文 | 在 PubMed 查看原文 ↗ |
| 发表日期 | 2026 |
| 作者 | Daniel Finol-Toro |
| 作者单位 | Otolaryngology Head & Neck Surgery Department, Torrecárdenas University Hospital, Calle Hermandad de Donantes de Sangre, s/n, 04009, Almería, Spain. daniel.finol.sspa@juntadeandalucia.es. |
| 期刊 | European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery |
| SCI 分区 | Q1 |
| IF | 2.3 |
| 研究类型 | 临床研究 · 临床 |
| 所属专科 | 鼻科 |
中文摘要
目的： 慢性鼻窦炎伴鼻息肉（CRSwNP）是一种影响生活质量的炎症性疾病。诊断延迟、症状复发和治疗失败增加了患者的不确定感和挫败感。本研究旨在回顾性探讨重度、接受生物制剂治疗的CRSwNP患者从症状出现到规范药物治疗和手术治疗均失败的真实体验，以及该疾病对其生活质量的影响。
方法： 开展了一项基于伽达默尔诠释学的定性研究。2024年4月至2025年4月期间，16名患有重度、接受生物制剂治疗的CRSwNP成人参与了研究。他们通过目的抽样在一家气道门诊被选取。研究进行了病史采集、鼻腔检查及影像学检查，随后进行深度访谈。数据按照伽达默尔诠释学循环方法进行解读，并通过Fleming方法加以操作化。
结果： 形成了三个主要主题：（1）症状的无声负担及其对日常生活的影响；（2）获取诊断的漫长历程；（3）治疗失败的体验及相关情绪压力。
结论： 重度、接受生物制剂治疗的CRSwNP患者经历沟通和睡眠困难、性生活受损、歧视和自我用药，这些显著恶化了其生活质量。诊断不确定性、自我管理的需求、治疗失败以及持续的信息寻求进一步加剧了这一问题。家庭支持对其生物心理社会福祉具有有意义的影响。这些发现说明了身体、情感和社会维度在整个疾病轨迹中是如何交织在一起的。
英文摘要
PURPOSE: Chronic rhinosinusitis with nasal polyps (CRSwNP) is an inflammatory disease that affects quality of life. Diagnostic delays, symptom recurrence, and treatment failure increase the uncertainty and frustration of those affected. The objective of this study was to retrospectively explore the lived experiences of people with severe, biologic-treated CRSwNP from the onset of symptoms through to the failure of both appropriate medical therapy and surgery, in relation to the impact of the disease on their quality of life.
METHODS: A qualitative study based on Gadamer's hermeneutics was conducted. Between April 2024 and April 2025, 16 adults with severe biologic-treated CRSwNP participated in the study. They were selected through purposive sampling in a single airway clinic. Medical history was taken, nasal examination was performed, and imaging tests were undertaken, followed by in-depth interviews. Data were interpreted following a Gadamerian hermeneutic-circle approach, operationalised through Fleming's method.
RESULTS: Three main themes were developed: (1) the silent burden of symptoms and their impact on daily life; (2) the odyssey to obtain a diagnosis; and (3) the experience of treatment failure and the associated emotional strain.
CONCLUSIONS: People with severe, biologic-treated CRSwNP experience communication and sleep difficulties, impaired sex life, discrimination and self-medication, which substantially deteriorates their quality of life. This is compounded by diagnostic uncertainty, the need for self-management, treatment failure, and the ongoing search for information. Family support has a meaningful impact on their biopsychosocial well-being. These findings illustrate how physical, emotional and social dimensions are intertwined throughout this disease trajectory.