It's more than dryness and fatigue: The patient perspective on health-related quality of life in Primary Sjögren's Syndrome - A qualitative study.
OBJECTIVE
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.
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
Angelika
A
Lackner
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
Anja
A
Ficjan
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
Martin H
MH
Stradner
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
Josef
J
Hermann
University of Applied Sciences JOANNEUM, Department of Health Studies, Institute of Occupational Therapy, Bad Gleichenberg, Austria.
Julia
J
Unger
Division of Rheumatology, Medical University Vienna, Vienna, Austria.
Tanja
T
Stamm
Division of Rheumatology, Medical University Vienna, Vienna, Austria.
Georg
G
Stummvoll
IMC University of Applied Sciences Krems, Krems an der Donau, Austria.|Medical University of Vienna, Department of Pediatrics and Adolescent Medicine, Division of Neonatology, Pediatric Intensive Care and Neuropediatrics, Vienna, Austria.
Mona
M
Dür
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.
Winfried B
WB
Graninger
Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University Graz, Graz, Austria.|Rheumatology Service, South Tyrolean Health Trust, Hospital of Bruneck, Bruneck, Italy.
Christian
C
Dejaco
D000368:Aged; D001290:Attitude; D005221:Fatigue / Q000453:epidemiology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D012859:Sjogren's Syndrome / Q000150:complications / Q000453:epidemiology* / Q000523:psychology