Severe Health‐Related Quality of Life Impairment in Active Primary Sjögren's Syndrome and Patient‐Reported Outcomes: Data From a Large Therapeutic Trial

@article{Cornec2017SevereHQ,
  title={Severe Health‐Related Quality of Life Impairment in Active Primary Sj{\"o}gren's Syndrome and Patient‐Reported Outcomes: Data From a Large Therapeutic Trial},
  author={Divi Cornec and Val{\'e}rie Devauchelle-Pensec and Xavier Mariette and Sandrine Jousse-Joulin and Jean-Marie Berthelot and Aleth Perdriger and Xavier Pu{\'e}chal and V{\'e}ronique le Guern and Jean Sibilia and Jacques-Eric Gottenberg and Laurent Chiche and Eric Hachulla and Pierre Yves Hatron and Vincent Goeb and Gilles Hayem and Jacques Morel and Charles Zarnitsky and Jean-Jacques Dubost and Philippe Saliou and Jacques‐Olivier Pers and Rapha{\`e}le Seror and Alain Saraux},
  journal={Arthritis Care \& Research},
  year={2017},
  volume={69}
}
To identify the principal determinants of health‐related quality of life (HRQOL) impairment in patients with active primary Sjögren's syndrome (SS) participating in a large therapeutic trial, Tolerance and Efficacy of Rituximab in Primary Sjögren's Syndrome (TEARS). 
University of Birmingham Health-related Quality of Life and costs in Sjögren’s’ syndrome
TLDR
Although pSS does not, in general, impair life expectancy and is often inappropriately considered a benign ‘nuisance’ disease for those patients without systemic manifestations, the associated costs and work disability are striking and strongly argues for the development of new therapeutic approaches to manage this neglected disease.
Pain and fatigue are predictors of quality of life in primary Sjögren’s syndrome
TLDR
The main predictors of poor QoL in patients with pSS were pain and fatigue, and these symptoms had an impact regardless of disease activity, age, schooling, marital status, work disability and fibromyalgia.
Health-related quality of life and costs in Sjögren's syndrome.
TLDR
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.
Mixed‐Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients
TLDR
This study aimed to identify the key barriers and priorities to participation in daily living activities in primary Sjögren's syndrome patients in order to develop potential future interventions.
The impact of disease activity and psychological status on quality of life for Chinese patients with primary Sjögren’s syndrome
TLDR
Measuring QoL should be considered as a vital part of the comprehensive evaluation of the health status of pSS patients, which could contribute some valuable clues in improving the management of disease and treatment decisions.
Assessing health-related quality of life in primary Sjögren's syndrome-The PSS-QoL.
Managing fatigue in patients with primary Sjögren’s syndrome: challenges and solutions
TLDR
An overview of fatigue management in primary Sjögren’s syndrome is provided and potential opportunities for future research are discussed.
Discrepancy between subjective symptoms, objective measures and disease activity indexes: the lesson of primary Sjögren's syndrome.
TLDR
An overview of glandular dysfunction in pSS as well as the impact of discrepancy between objective assessment, subjective symptom and extraglandular disease activity on disease management are provided.
A comprehensive overview of living with Sjögren’s: results of a National Sjögren’s Foundation survey
TLDR
A high burden of disease to SjD respondents is demonstrated, including symptoms, QoL, and financial burden, and the top aspects of quality of life reported to be impaired by Sjögren’s are sex life, hobbies, social activities and extracurricular activities, job/career or ability to work, and finding the correct word during conversations.
Disease activity and patient reported outcome measures in Sjögren's - what are the best tools to evaluate?
TLDR
Recent changes in the assessment of pSS patients, and the emergence of new targeted therapies, have put a greater emphasis on the design of clinical trials in pSS, and led for the first time to a positive randomized clinical trial.
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TLDR
Rituximab infusions without corticosteroid therapy produced meaningful improvements in HRQoL, and Improvements in the physical and mental component summary scores failed to correlate with improvements in the VAS scores.
The EULAR Sjogren's syndrome patient reported index as an independent determinant of health-related quality of life in primary Sjogren's syndrome patients: in comparison with non-Sjogren's sicca patients.
TLDR
HRQOL levels were differentially associated with clinical facets in pSS and non-SS sicca patients, although the groups had similar clinical symptoms and HRQOL reduction.
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Diminished health quality and excess health costs are prevalent among PSS patients and delayed diagnosis, sicca related morbidity, fatigue, pain and depression are substantial suggesting unmet health needs and the importance of earlier recognition of PSS.
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TLDR
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TLDR
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TLDR
To define parameters predictive of lymphoma development in patients with primary Sjögren's syndrome (SS), parameters are defined and histopathological parameters are analyzed.
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TLDR
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TLDR
A core set of outcome measures used in combination suggests that rituximab could be effective and infliximab ineffective in pSS, and the SSRI might prove useful as the primary outcome measure for future therapeutic trials in primary SS.
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TLDR
This study determined disease activity levels, PASS and MCII of ESSDAI and ESSPRI, which will help designing future clinical trials in SS and the proposal is to include patients with moderate activity and define response to treatment as an improvement of E SSDAI at least three points.
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