加拿大患者患有狼性炎的经验:定性分析
Francesca S Cardwell1, Susan J Elliott2, Megan R W Barber3
1Department of Geography and Environmental Management, University of Waterloo, Waterloo, Ontario, Canada fcardwel@uwaterloo.ca.
Lupus science & medicine
|December 13, 2023
概括
患有狼性炎 (LN) 的生活在诊断,日常生活和治疗方面存在挑战. 患者的经验凸显出需要更好的信息和社会意识,以改善福祉.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學.
- 类风湿病学 类风湿病学
- 患者报告的结果.
背景情况:
- 狼性炎 (LN) 是系统性红斑狼 (SLE) 的严重表现.
- 患有LN的患者的生活经验仍未得到充分探索.
- 了解患者的观点对于改善护理至关重要.
研究的目的:
- 为了调查患者对LN诊断的经验.
- 探索与LN生活的挑战.
- 了解患者对LN医疗保健和治疗的观点.
主要方法:
- 进行了半结构化的深度采访.
- 从加拿大狼队伍中招募了30名活检证明LN (ISN/RPS类III,IV或V) 的患者.
- 参与者是18岁或以上的成年人.
主要成果:
- 患者在诊断方面遇到困难和延迟,强调需要获得特定于LN的信息.
- 由于其不可预测性,与LN生活显著影响了身体和心理健康,人际关系,教育和计划生育.
- 虽然大多数患者对护理感到满意,但药物副作用和缺乏意识也引起了关注.
结论:
- 临床瘤的不可预测性,治疗负担和低意识显著影响患者的体验.
- 结果将指导患者资源的开发,以提高理解和福祉.
- 提高患者和社会意识对于更好的LN管理至关重要.
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