It's more than dryness and fatigue: The patient perspective on health-related quality of life in Primary Sjögren's Syndrome - A qualitative study

Angelika Lackner, Anja Ficjan, Martin H Stradner, Josef Hermann, Julia Unger, Tanja Stamm, Georg Stummvoll, Mona Dür, Winfried B Graninger, Christian Dejaco, Angelika Lackner, Anja Ficjan, Martin H Stradner, Josef Hermann, Julia Unger, Tanja Stamm, Georg Stummvoll, Mona Dür, Winfried B Graninger, Christian Dejaco

Abstract

Objectives: 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).

Methods: 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.

Results: 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.

Conclusions: 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.

Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1. Process of data analysis.
Fig 1. Process of data analysis.
Fig 2. Three main themes of HRQL…
Fig 2. Three main themes of HRQL in PSS patients with their influence among each other.

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