scholarly journals AB0646 Determinants of quality of life in systemic sclerosis and patient's perception of their illness

2017 ◽  
Author(s):  
L Groseanu ◽  
A Balanescu ◽  
D Predeteanu ◽  
D Opris-Belinski ◽  
V Bojinca ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Patient’S Perception

scholarly journals ILD-specific health-related quality of life in systemic sclerosis-associated ILD compared with IPF

2020 ◽  
Vol 7 (1) ◽  
pp. e000598
Author(s):  
Michael T Durheim ◽  
Anna-Maria Hoffmann-Vold ◽  
Tomas M Eagan ◽  
Arnt-Ove Hovden ◽  
May Brit Lund ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Function ◽  
Forced Vital Capacity ◽  
Vital Capacity ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

IntroductionIdiopathic pulmonary fibrosis (IPF) and systemic sclerosis-associated interstitial lung disease (SSc-ILD) are fibrotic ILDs with divergent disease populations. Little is known about health-related quality of life (HRQL) in SSc-ILD relative to IPF.MethodsWe used the Kings Brief Interstitial Lung Disease Questionnaire (K-BILD) to compare HRQL in a cross-sectional study of 57 patients with IPF and 29 patients with SSc-ILD. Analysis of covariance was used to adjust for age, gender and lung function.ResultsThe unadjusted mean K-BILD score was 63.1 (95% CI 57.1 to 69.1) among patients with SSc-ILD, as compared with 54.7 (51.8–57.5) among those with IPF (p=0.005). However, this difference in HRQL was attenuated after adjustment for age, gender and lung function. In a multivariable model, only forced vital capacity was associated with K-BILD scores. K-BILD scores were correlated with both forced vital capacity and with other relevant HRQL measures, regardless of ILD diagnosis.DiscussionPatients with SSc-ILD may have better ILD-specific quality of life than patients with IPF, but this difference appears to be driven primarily by better lung function. These results underscore the impact of lung function on HRQL in fibrotic ILD and the utility of K-BILD to assess HRQL in SSc-ILD.

scholarly journals FRI0233 IMPACT AND ADHERENCE TO THE MEDITERRANEAN DIET IN SYSTEMIC SCLEROSIS ITALIAN PATIENTS: CORRELATION WITH GASTROINTESTINAL SYMPTOMS, MOOD DISTURBANCES AND QUALITY OF LIFE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 700.2-700
Author(s):  
G. De Luca ◽  
G. Natalello ◽  
G. Abignano ◽  
C. Campochiaro ◽  
D. Temiz Karadağ ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Mediterranean Diet ◽  
Dietary Habits ◽  
Anxiety And Depression ◽  
Research Support ◽  
Work Impairment ◽  
Gi Symptoms ◽  
The Mediterranean

Background:Gastrointestinal involvement(GI) is a common feature of systemic sclerosis(SSc) and can be highly disabling, representing a major cause of morbidity and reduced quality of life(QoL). The impact of dietary habits on GI symptoms, mood and QoL has not been extensively evaluated.Objectives:To evaluate the adherence to the Mediterranean Diet(MD) in an Italian multicenter cohort of SSc patients, and its impact on GI symptoms and other disease features, depression, anxiety and overall QoL.Methods:Consecutive SSc(ACR/EULAR2013) patients from 4 Italian cohorts were enrolled. Dietary habits and adherence to the MD were assessed using the 14-item MEDAS and QueMD questionnaires. Presence and severity of depressive/anxious symptoms and QoL were evaluated with the Hospital Anxiety and Depression Scale(HADS) and the SSc-HAQ(S-HAQ). GI symptoms were assessed with the Reflux Disease Questionnaire(RDQ) and the UCLA SCTC GI Tract 2.0 questionnaire(USG). Associations with patients’ lifestyle, disease characteristics, and nutritional status were explored.Results:265 patients (94.7% females; age 55.8±13.6years; disease duration 9.1±7.0years; diffuse SSc 31.8%; Scl70 + 35.8%;ulcers 23.4%;ILD 29.4%;BMI 23.7±4.4 Kg/m2; obese 11.3%,overweight 23.4%,underweight 4.9%) were enrolled.Overall MD adherence was moderate(7.5±1.9) according to MEDAS and it correlated with QueMD score(4.53±1.96)(R=.371,p<0.001). MD adherence was optimal in 39 patients(14.7%), more frequently from Central-Southern Italy(p=0.036); 189 patients(71.3%) had a good and 37(14.0%) a poor MD adherence.GI symptoms were moderate/severe according to USG in 37(14.0%) patients(USG:0.41±0.40), and heartburn was the most common GI symptom(35.2%). The prevalence of significant anxiety and depression was 24.1% and 17.0%.An inverse correlation was found between MD adherence and mood disturbances at HADS(MEDAS; R=-0.181,p=0.04), work impairment(QueMD;R=-0.247,p=0.005) and reduced QoL, both for GI (constipation at USG: R=-0.133,p=0.032) and general S-HAQ items(bowel:R=-0.181,p=0.04;severity R=-0.202,p=0.01;Raynaud:R=-0.217,p<0.001;ulcers: R=-0.207,p=0.01). MD adherence directly correlated with lung function(MEDAS;R=0.181,p=0.023 for FVC and R=0.170,p=0.03 for DLCO). Patients with MD optimal adherence had lower HADS depression(p=0.04) and S-HAQ scores(HAQ,p=0.04; Raynaud,p=0.005; ulcers,p=0.02) and lower work impairment and lost work time(p=0.03). No significant correlation emerged between MD adherence and BMI, or specific symptoms. Depression and anxiety directly correlated with the severity of reported upper GI symptoms according to both scales (RDQ-GERD:R=0.261,p=0.001; USG:R=0.263,p<0.001) and general S-HAQ items (HAQ: R=0.136,p=0.032;severity R=0.233,p<0.001;bowel: R=0.135,p=0.04;breath: R=0.133,p=0.03; ulcers: R=0.132,p=0.037). Results were confirmed after exclusion of psychiatric(11.7%) and fibromyalgic(15.5%) patients.Conclusion:Unsatisfactory MD adherence is associated with a low mood, impaired QoL, work impairment, GI and vascular symptoms in Italian SSc patients. The promotion of a healthy lifestyle could positively impact on QoL and disease status of SSc patients.References:[1]Gnagnarella P, et a. NMCD 2018. DOI: 10.1016/j.numecd.2018.06.006[2]Jaeger VK et al. PLoS One, 2016.[3]Dinu M et al. Eur J Clin Nutr 2018. doi: 10.1038/ejcn.2017.58.[4]Khanna D, et al.Arthritis Rheum. 2009. doi: 10.1002/art.24730.Acknowledgments:GILSDisclosure of Interests:Giacomo De Luca Grant/research support from: SOBI, Speakers bureau: SOBI, Novartis, Pfizer, MSD, Celgene, Gerlando Natalello: None declared, Giuseppina Abignano: None declared, Corrado Campochiaro Speakers bureau: Novartis, Pfizer, Roche, GSK, SOBI, Duygu Temiz Karadağ: None declared, Maria De Santis: None declared, Elisa Gremese Speakers bureau: Abbvie, BMS, Celgene, Jannsen, Lilly, MSD, Novartis, Pfizer, Sandoz, UCB, Silvia Laura Bosello Speakers bureau: Abbvie, Pfizer, Boehringer, Lorenzo Dagna Grant/research support from: Abbvie, BMS, Celgene, Janssen, MSD, Mundipharma Pharmaceuticals, Novartis, Pfizer, Roche, SG, SOBI, Consultant of: Abbvie, Amgen, Biogen, BMS, Celltrion, Novartis, Pfizer, Roche, SG, and SOBI

scholarly journals THU0632-HPR DETERMINANTS OF HAPPINESS AND QUALITY OF LIFE IN PEOPLE WITH SYSTEMIC SCLEROSIS: A STRUCTURAL EQUATION MODELLING APPROACH

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 561.1-561
Author(s):  
T. Santiago ◽  
E. Santos ◽  
A. C. Duarte ◽  
P. Martins ◽  
M. Sousa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Disease Activity ◽  
Personality Traits ◽  
Structural Equation Modelling ◽  
Structural Equation ◽  
Effective Control ◽  
Equation Modelling ◽  
Disease Impact

Background:In recent years more attention has been given to patients reported outcomes (PROs). Systemic sclerosis (SSc) is no exception. As there is no effective treatment or cure to SSc, it is important to recognize the relevance to patients of the different features of the disease to improve quality and enjoyment of life: the ultimate targets of therapy. Remarkably lacking in PROs is the evaluation of the overall perspective of subjective well being, equivalent to ‘happiness’ or “positive psychological dimensions”.Objectives:To examine the determinants of happiness and quality of life (QoL) in patients with SSc with emphasis on disease activity, disease impact and personality traits.Methods:This is an observational, cross-sectional and multicenter study from six rheumatology clinics in Portugal. A total of 113 patients with SSc with a complete set of data on disease activity, disease impact, personality, quality of life and happiness were included.Structural equation modelling (latent variable structural model) was used to estimate the association between the variables using a maximum likelihood estimation with Satorra-Bentler’s correction and performed with STATA® 15.0. Two hypotheses were pursued: H1 – Disease activity and impact of disease are negatively associated to overall QoL and happiness; H2 – ‘Positive’ personality traits are related to happiness both directly and indirectly through perceived disease impact.Results:Results obtained in the structural equation measurement model indicated a good fit [χ2/df=1.44; CFI=0.93; TLI=0.90; RMSEA=0.06] and supported all driving hypotheses (Figure 1). Happiness was positively related to ‘positive’ personality (β=0.45, p=0.01) and, to a lesser extent, negatively related with impact of disease (β=-0.32; p=0.01). This impact, in turn, was positively related to EUSTAR activity score (β=0.37; p<0.001) and mitigated by ‘positive’ personality traits (β=-0.57; p<0.001). Impact of disease had a much stronger relation with QoL than with happiness (β=-0.78, p<0.001). Quality of life and happiness had no statistically significant relationship.Conclusion:Optimization of Qol and happiness in people with SSc requires effective control of the disease process. Personality and its effects upon the patient´s perception of the disease impact, seems to play a pivotal mediating role in these relations and should deserve paramount attention if happiness and enjoyment of life is taken as the ultimate goal of health care.Disclosure of Interests:Tânia Santiago: None declared, Eduardo Santos: None declared, Ana Catarina Duarte: None declared, Patrícia Martins: None declared, Marlene Sousa: None declared, Franscisca Guimarães: None declared, Soraia Azevedo: None declared, Raquel Ferreira: None declared, Miguel Guerra: None declared, Ana Cordeiro Consultant of: Ana Cordeiro has acted as a consultant for Roche, Speakers bureau: Ana Cordeiro has received speaker fees from Boehringer Ingelheim, Lilly, and Vitoria, Inês Cordeiro: None declared, Sofia Pimenta: None declared, Patrícia Pinto: None declared, Maria Joao Salvador: None declared, José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis

The Systemic Sclerosis Questionnaire (SySQ): Validation of the Translation of the Original German Version Into Spanish and Its Relationship to the Disease and to Quality of Life

2019 ◽  
Vol 15 (5) ◽  
pp. 282-288 ◽  
Author(s):  
Maria Pilar Cruz-Domínguez ◽  
Moisés Casarrubias-Ramírez ◽  
Victor Gasca-Martínez ◽  
Cindy Maldonado García ◽  
Rosa Angélica Carranza-Muleiro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
German Version

scholarly journals Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers

2009 ◽  
Vol 24 (6) ◽  
pp. 585-594 ◽  
Author(s):  
Josep Lluís Conde-Sala ◽  
Josep Garre-Olmo ◽  
Oriol Turró-Garriga ◽  
Secundino López-Pousa ◽  
Joan Vilalta-Franch
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Perceived Quality ◽  
Perceived Quality Of Life ◽  
Patient’S Perception

scholarly journals Perception of Aesthetic Impairment in Patients With Systemic Sclerosis: A Case Control Study Using a Semi-Quantitative Scale for Body Image Assessment.

2021 ◽  
Author(s):  
Méryem-Maud Farhat ◽  
Pierre Guerreschi ◽  
Sandrine Morell-Dubois ◽  
Valérie Deken ◽  
Julien Labreuche ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Body Image ◽  
Systemic Sclerosis ◽  
Statistical Correlation ◽  
Ease Of Use ◽  
Disease Assessment ◽  
Image Assessment ◽  
Two Populations ◽  
Control Study

Abstract Background: Systemic sclerosis (SSc) is a fibrotic disease. Assessment of body image could be central in optimizing care. Yet, data are scarce. The main objective was to assess perception of aesthetic impairment using a visual aesthetic scale (AES) in patients with SSc compared to healthy subjects. Secondary objectives were to assess associations between perception of aesthetic impairment and standardized questionnaires for aesthetic impairment as well as clinical, psychological/quality of life, and functional parameters of SSc. Methods: This study evaluated and compared perception of aesthetic impairment in two populations: patients with SSc, in a referral center at Lille Hospital, France, and healthy controls. Results: This study included 88 patients (69 [78.4%] women) with a median age of 52 years and 88 controls (49 [55.7%] women) with a median age of 45 years. Perception of aesthetic impairment assessed using the AES was poorer in patients than in controls (3.7 ± 0.3 vs 2.8 ± 0.3, p=0.028), with statistical correlation with ASWAP. Patients with anxiety or depressive symptoms had significantly higher AES scores. Conclusion: The AES appears to be an ease of use tool to evaluate body image. Correlations found with psychological and quality of life parameters reflect the importance of these parameters for body image evaluation and its complex assessment.Trials registration: NCT03271320

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