Match!

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

Published on Feb 9, 2017in PLOS ONE2.776
· DOI :10.1371/JOURNAL.PONE.0172056
Angelika Lackner5
Estimated H-index: 5
(University of Graz),
Anja Ficjan7
Estimated H-index: 7
(University of Graz)
+ 7 AuthorsChristian Dejaco29
Estimated H-index: 29
(University of Graz)
Sources
Abstract
Objectives In Primary Sjogren’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.
Figures & Tables
  • References (40)
  • Citations (14)
📖 Papers frequently viewed together
44 Citations
25 Citations
78% of Scinapse members use related papers. After signing in, all features are FREE.
References40
Newest
#1N. van Leeuwen (UU: Utrecht University)H-Index: 4
#2Ercolie R. Bossema (UU: Utrecht University)H-Index: 15
Last. Rinie Geenen (UU: Utrecht University)H-Index: 43
view all 8 authors...
This study examined dimensions of crying and its relations with ocular dryness and mental well-being in patients with Sjogren's syndrome, a systemic autoimmune disease with dryness as primary symptom. Three-hundred patients with Sjogren's syndrome completed questionnaires on crying, dryness, and well-being. The crying questionnaire revealed four dimensions: "Cryability" (comprising both crying sensibility and ability to cry), Somatic consequences, Frustration, and Suppression. Compared to 100 de...
3 CitationsSource
#1Di Ying J. Ngo (Khoo Teck Puat Hospital)H-Index: 1
#2William Thomson (University of Otago)H-Index: 48
Last. Shelagh Ferguson (University of Otago)H-Index: 9
view all 4 authors...
Background Sjogren’s Syndrome is an autoimmune exocrinopathy characterised by lymphocytic infiltration of exocrine glands in multiple sites, with dry mouth as a primary presenting symptom. Although quantitative studies have shown the negative impact of both dry mouth and Sjogren’s Syndrome on patients’ quality of life, no qualitative diary and interview study has been undertaken to examine the lived experience of dry mouth for Sjogren’s Syndrome sufferers. The aim of this qualitative study was t...
8 CitationsSource
#1Raphaèle Seror (University of Paris-Sud)H-Index: 38
#2Elke Theander (Lund University)H-Index: 34
Last. Simon J. Bowman (Queen Elizabeth Hospital Birmingham)H-Index: 37
view all 29 authors...
Objectives To validate the two recently developed disease activity indexes for assessment of primary Sjogren's syndrome (SS): the European League Against Rheumatism (EULAR) SS Patient Reported Index (ESSPRI) and the EULAR SS Disease Activity Index (ESSDAI). Methods A prospective international 6-month duration validation study was conducted in 15 countries. At each visit, physicians completed ESSDAI, SS disease activity index (SSDAI), Sjogren's Systemic Clinical Activity Index (SCAI) and physicia...
92 CitationsSource
#1Ruchika Patel (UPenn: University of Pennsylvania)H-Index: 2
#1Ruchika PatelH-Index: 1
Last. Anupama ShahaneH-Index: 1
view all 2 authors...
Sjogren’s syndrome is a chronic systemic autoimmune disease characterized by lymphocytic infiltration of exocrine glands. It can present as an entity by itself, primary Sjogren’s syndrome (pSS), or in addition to another autoimmune disease, secondary Sjogren’s syndrome (sSS). pSS has a strong female propensity and is more prevalent in Caucasian women, with the mean age of onset usually in the 4th to 5th decade. Clinical presentation varies from mild symptoms, such as classic sicca symptoms of dr...
136 CitationsSource
#1Dennis Lendrem (Newcastle upon Tyne Hospitals NHS Foundation Trust)H-Index: 21
#2Sheryl Mitchell (Newcastle upon Tyne Hospitals NHS Foundation Trust)H-Index: 13
Last. Wan-Fai Ng (Newcastle upon Tyne Hospitals NHS Foundation Trust)H-Index: 28
view all 29 authors...
44 CitationsSource
#1Yan Liang ('SMMU': Second Military Medical University)H-Index: 23
#2Zaixing Yang ('SMMU': Second Military Medical University)H-Index: 17
Last. Renqian Zhong ('SMMU': Second Military Medical University)H-Index: 25
view all 4 authors...
Objective To investigate the association between primary Sjogren9s syndrome (pSS) and the risks of malignancy including overall malignancy and site-specific malignancies through a systematic review and meta-analysis. Methods We searched Pubmed before January 2013, with a restriction to English language publications. Studies were included if they met the following criteria: (1) a cohort or observational study; (2) pSS as one of the exposure interests; (3) cancer as an outcome of interest; (4) rel...
86 CitationsSource
#1Laure Gossec (University of Paris)H-Index: 57
#2Maarten de WitH-Index: 27
Last. Tore K. KvienH-Index: 89
view all 26 authors...
Introduction The objective was to develop a questionnaire that can be used to calculate a score reflecting the impact of psoriatic arthritis (PsA) from the patients’ perspective: the PsA Impact of Disease (PsAID) questionnaire. Methods Twelve patient research partners identified important domains (areas of health); 139 patients prioritised them according to importance. Numeric rating scale (NRS) questions were developed, one for each domain. To combine the domains into a single score, relative w...
135 CitationsSource
#2T. HyphantisH-Index: 3
Last. Alexandros A. Drosos (UoI: University of Ioannina)H-Index: 55
view all 5 authors...
Background Illness perceptions and psychological distress are important in determining outcomes in rheumatic diseases. Objectives We aimed to assess illness perceptions and psychological distress and their associations with Physical health-related quality of life (HRQoL) in primary Sjogren9s Syndrome (pSS), Systemic Lupus Erythematosus (SLE) and Rheumatoid arthritis (RA). Methods In 57 pSS, 75 SLE and 199 RA patients we administered the Patient Health Questionnaire (PHQ-9), the Symptom Distress ...
7 CitationsSource
#1Konstantinos Kotsis (UoI: University of Ioannina)H-Index: 9
#2Paraskevi V. Voulgari (UoI: University of Ioannina)H-Index: 39
Last. Thomas Hyphantis (UoI: University of Ioannina)H-Index: 30
view all 6 authors...
Notwithstanding that psychological distress and illness perceptions are important in determining outcomes in rheumatic diseases, few studies investigated these variables in primary Sjogren’s syndrome (pSS). We aimed to compare illness perceptions and psychological distress in patients with pSS, systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) and to test whether their associations with health-related quality of life (HRQoL) are similar in these groups of patients. In 57 patients ...
30 CitationsSource
#1Tanja Stamm (Medical University of Vienna)H-Index: 42
#2Robin Hieblinger (LMU: Ludwig Maximilian University of Munich)H-Index: 5
Last. Michaela Coenen (LMU: Ludwig Maximilian University of Munich)H-Index: 20
view all 10 authors...
Objective The aim of the present study was to compare and contrast the concepts of functioning in daily life which were important to patients with different rheumatological conditions. Method The study comprised a qualitative analysis of 44 focus groups in eight European countries, in 229 patients with fibromyalgia, hand osteoarthritis, psoriatic arthritis, rheumatoid arthritis, systemic lupus erythematosus and systemic sclerosis, using the World Health Organization, 2001 International Classific...
14 CitationsSource
Cited By14
Newest
#1Leslie R. Harrold (UMMS: University of Massachusetts Medical School)H-Index: 37
#2Ying ShanH-Index: 6
Last. Elliot D. Rosenstein (Overlook Medical Center)H-Index: 20
view all 9 authors...
: The objective of this study was to compare rheumatoid arthritis (RA) disease activity and patient-reported outcomes (PROs) in a national sample of patients with RA with/without Sjogren's syndrome (SS). Adults with RA from a large observational US registry (Corrona RA) with known SS status between 22 April 2010 and 31 July 2018 and a visit 12 (± 3) months after index date were identified (n = 36,256/52,757). SS status: determined from a yes/no variable reported at enrolment into the Corrona RA ...
Source
#1Gladyz Fernández-Martínez (UNAM: National Autonomous University of Mexico)H-Index: 2
view all 3 authors...
Resumen Objetivo Evaluar la calidad de vida general y oral, y sus correlaciones con el flujo salival no estimulado (FSNE) y los sintomas de xerostomia en pacientes con sindrome de Sjogren primario (SSP). Metodos Se incluyeron 60 pacientes con SSP y 60 controles pareados por genero y ±3 anos de edad. Se midio el FSNE y se aplico cuestionario ESSPRI (Cuestionario reportado de sintomas en Sindrome de Sjogren de la Liga Europea contra el reumatismo [EULAR]). Se utilizo la version corta de SF-36 para...
6 CitationsSource
#1Gladyz Fernández-Martínez (UNAM: National Autonomous University of Mexico)H-Index: 2
view all 3 authors...
Abstract Objective To assess health-related quality of life (HRQoL) and oral health-related quality of life, and correlate them with unstimulated whole salivary flow (UWSF) and oral sicca symptoms in patients with primary Sjogren's syndrome (PSS). Methods We included 60 patients with PSS and 60 healthy controls matched according to gender and age (±3 years). We measured the UWSF and scored the European League Against Rheumatism (EULAR) Sjogren's Syndrome Patient Reported Index (ESSPRI). We asses...
6 CitationsSource
#1Ghaith Noaiseh (KU: University of Kansas)
#2Alan N. Baer (JHUSOM: Johns Hopkins University School of Medicine)H-Index: 27
Abstract Sjogren's syndrome is a systemic autoimmune disease defined by its targeted inflammation of the salivary and lacrimal glands, resulting in dry mouth and eyes in the majority and persistent or recurrent salivary gland enlargement in a minority of those affected. Involvement of major organs, an increased risk of lymphoma, and autoantibodies against ubiquitous cellular ribonucleoproteins define some of its systemic features. Those affected have a high symptom burden and the development of ...
Source
#1Adrianos Nezos (UoA: National and Kapodistrian University of Athens)H-Index: 15
#2Maria-Eleutheria Evangelopoulos (UoA: National and Kapodistrian University of Athens)H-Index: 1
Last. Clio P. Mavragani (UoA: National and Kapodistrian University of Athens)H-Index: 30
view all 3 authors...
Abstract Comorbidities including subclinical atherosclerosis, neuropsychological aberrations and lymphoproliferation represent a major burden among patients with systemic autoimmune diseases; they occur either as a result of intrinsic disease related characteristics including therapeutic interventions or traditional risk factors similar to those observed in general population. Soluble molecules recently shown to contribute to subclinical atherosclerosis in the context of systemic lupus erythemat...
1 CitationsSource
#1Zhe Feng (Nanjing University of Chinese Medicine)H-Index: 4
Last. Yan Lu (NU: Nanjing University)H-Index: 1
view all 8 authors...
Objective: To assess the effectiveness and safety of the total glucosides of paeony (TGP) on the treatment of primary Sjogren's syndrome (pSS) by conducting a meta-analysis. Methods: Eight databases were searched from their inception to December 10, 2018 for randomized controlled trials (RCTs). The Revman 5.3 software was used for this meta-analysis. Results: Nine RCTs which included 770 participants were identified. Pooled results showed that significant difference in Schirmer's test (P < 0.000...
3 CitationsSource
#1Samira Tatiyama Miyamoto (UFES: Universidade Federal do Espírito Santo)H-Index: 5
#2Valéria Valim (UFES: Universidade Federal do Espírito Santo)H-Index: 19
Last. Benjamin A FisherH-Index: 19
view all 3 authors...
: Health-related quality of life (HRQoL) has an increasing role in medical decision-making. This review of the literature aims to provide an overview on HRQoL, costs, and work disability in SS, a disease characterized by focal lymphocytic infiltration of exocrine glands with no therapeutics of proven immunomodulatory potential. HRQoL is markedly reduced in SS in multiple studies across many countries when compared with HRQoL in healthy controls. The reduction in HRQoL is similar to that observed...
5 CitationsSource
#1Vera Milic (University of Belgrade)H-Index: 8
#2Milica Grujic (University of Belgrade)
Last. Nemanja Damjanov (University of Belgrade)H-Index: 29
view all 7 authors...
Objective Patients with primary Sjogren’s Syndrome (pSS) have diminished health quality and fatigue, arthralgia along with dryness of the mouth and eyes have major impact on their psychological and social aspects of life. The purpose of this study was to determine psychological features of patients with pSS. We analyzed personality, depression and anxiety of patients with primary Sjogren’s Syndrome (pSS) in comparison with patients with rheumatoid arthritis (RA) and healthy controls (HC) and ass...
1 CitationsSource
#1Rudolf PuchnerH-Index: 6
#2Judith SautnerH-Index: 12
Last. Herwig PieringerH-Index: 13
view all 9 authors...
Objective To evaluate the effect of rheumatoid arthritis (RA) on impairing women’s sexuality regarding motivation, activity, and satisfaction, and to assess the correlation of disease-related physical impairment within sexual functioning. Methods An anonymous survey among women with RA and healthy controls (HC) using standardized questionnaires, predominantly the Changes in Sexual Functioning Questionnaire-short form (CSFQ-14). In addition, disease activity, depression, and disability were evalu...
5 CitationsSource
#1Katie L. Hackett (National Health Service)H-Index: 7
#2Katherine Deane (UEA: University of East Anglia)H-Index: 33
view all 8 authors...
Objective - Functional ability and participation in life situations are compromised in many primary Sjogren's syndrome (PSS) patients. This study aims to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods - Group concept mapping (GCM), a semi-quantitative, mixed-methods, approach was used to identify and structure ideas from UK PSS patients, adults living with a PSS patient (AHMs) and health care profe...
4 CitationsSource