Lackner Angelika, Ficjan Anja, Stradner Martin H, Hermann Josef, Unger Julia, Stamm Tanja, Stummvoll Georg, Dür Mona, Graninger Winfried B, Dejaco Christian
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
University of Applied Sciences JOANNEUM, Department of Health Studies, Institute of Occupational Therapy, Bad Gleichenberg, Austria.
PLoS One. 2017 Feb 9;12(2):e0172056. doi: 10.1371/journal.pone.0172056. eCollection 2017.
In Primary Sjögren's Syndrome (PSS), there is an apparent lack of data concerning the perspectives of patients, their needs, preferences and difficulties of daily life. This qualitative study was conducted to explore perspectives and needs of patients with PSS that influence health related quality of life (HRQL).
We recruited 20 PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. In total, 6 focus group sessions (with three to four patients per group) were performed. A modified meaning condensation procedure was used to analyse the data.
The interview analysis resulted in 484 meaning units, 254 subconcepts and 86 concepts. The identified concepts were grouped into three dimensions: physical dimension, psychological & emotional challenges and social life & daily living. A dependency between the three categories was identified. The concepts most commonly reported by patients were related to the physical dimension: pain and dryness as well as complaints associated with/provoked by these symptoms. Patients also reported shortness of breath, fatigue und constipation.
This qualitative study underpins that HRQL in PSS patients is affected by several factors. The problems are not limited to dryness, pain and fatigue while the complaints secondary to these symptoms are important to patients with PSS significantly affecting physical, psychological and social life components of HRQL. A disease-specific patient related outcome measures for clinical practice and trials should be developed considering the different aspects of HRQL in PSS.
在原发性干燥综合征（PSS）中，明显缺乏关于患者观点、需求、偏好及日常生活困难的数据。本定性研究旨在探讨影响健康相关生活质量（HRQL）的PSS患者的观点和需求。
我们从奥地利格拉茨医科大学的PSS队列中招募了20名符合欧美共识分类标准的PSS患者。总共进行了6次焦点小组会议（每组三至四名患者）。采用改良的意义浓缩程序分析数据。
访谈分析得出484个意义单元、254个亚概念和86个概念。所确定的概念分为三个维度：身体维度、心理和情感挑战以及社会生活和日常生活。确定了这三个类别之间的相关性。患者最常报告的概念与身体维度有关：疼痛、干燥以及与这些症状相关/由这些症状引发的不适。患者还报告了呼吸急促、疲劳和便秘。
这项定性研究证实，PSS患者的HRQL受多种因素影响。问题不仅限于干燥、疼痛和疲劳，而这些症状引发的不适对PSS患者很重要，显著影响了HRQL的身体、心理和社会生活组成部分。应考虑PSS中HRQL的不同方面，制定针对临床实践和试验的特定疾病的患者相关结局指标。
