Happiness, quality of life and their determinants among people with systemic sclerosis: a structural equation modeling approach

Rheumatology ◽  
2021 ◽  
Author(s):  
Tânia Louza Santiago ◽  
Eduardo Santos ◽  
Ana Catarina Duarte ◽  
Patrícia Martins ◽  
Marlene Sousa ◽  
...  

Abstract Background Patients’ objectives and experiences must be core to the study and management of chronic diseases, such as systemic sclerosis (SSc). Although patient-reported outcomes have attracted increasing attention, evaluation of the impact of disease on the overall subjective well-being, equivalent to ‘happiness’, is remarkably lacking. Objectives To examine the determinants of happiness and quality of life in patients with SSc, with emphasis on disease features and personality traits. Methods Observational, cross-sectional multicentre study, including 142 patients, with complete data regarding disease activity, disease impact, personality, health-related quality of life (HR-QoL) and happiness. Structural equation modelling was used to evaluate the association between the variables. Results The results indicated an acceptable fit of the model to the data. Perceived disease impact had a significant negative direct relation with HR-QoL (β=-0.79, p < 0.001) and with happiness (β=-0.52, p < 0.001). Positive personality traits had a positive relation with happiness (β = 0.36, p = 0.002) and an important indirect association upon QoL (β = 0.43) and happiness (β = 0.23). Perceived disease impact is influenced by body image, fatigue, and SSc-related disability to a higher degree (β =  0.6–0.7) than by disease activity (β = 0.28) or form (β = 0.17). Impact of disease had a much stronger relation with HR-QoL than with happiness. Conclusions The results suggest that treatment strategies targeting not only disease control but also the mitigation of relevant domains of disease impact (body image, fatigue, global disability) may be important to improve the patients’ experience of the disease. The reinforcement of resilience factors, such as positive psychological traits, may also play a contributory role towards better patient outcomes.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 561.1-561
Author(s):  
T. Santiago ◽  
E. Santos ◽  
A. C. Duarte ◽  
P. Martins ◽  
M. Sousa ◽  
...  

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


2021 ◽  
pp. 109980042110096
Author(s):  
Ruey-Hsia Wang ◽  
Chia-Chin Lin ◽  
Shi-Yu Chen ◽  
Hui-Chun Hsu ◽  
Chiu-Ling Huang

Purposes: Women with diabetes (WD) are more severely impacted by the consequence of suboptimal diabetes control. This study aims to examine the impact of demographic and disease characteristics, baseline self-stigma, role strain, diabetes distress on Hemoglobin A1C (A1C) levels, quality of life (D-QoL) and 6-month A1C levels in younger WD. Methods: This study was a 6-month prospective study. In total, 193 WD aged 20–64 years were selected by convenience sampling from three outpatient clinics in Taiwan. Demographic and disease characteristics, self-stigma, role strain, diabetes distress, A1C levels, and D-QoL were collected at baseline. A1C levels were further collected 6 months later. Structural equation modeling was conducted to test the hypothesized model. Results: The final model supported that higher baseline D-QoL directly associated with lower concurrent A1C levels and indirectly associated with lower 6-month A1C levels through baseline A1C levels. Higher baseline self-stigma, role strain, and diabetes distress directly associated with lower baseline D-QoL, and indirectly associated with higher 6-month A1C levels through D-QoL. Conclusion: Improving self-stigma, role strain, and diabetes distress should be considered as promising strategies to improve D-QoL in young WD. D-QoL plays a mediation role between baseline self-stigma, role strain, diabetes distress and subsequent glycemic control in younger WD. Enhancing baseline D-QoL is fundamental to improve subsequent glycemic control.


2021 ◽  
Vol 16 (5) ◽  
pp. 895-901
Author(s):  
Thanin Sangkhaduang ◽  
Parichart Visuthismajarn ◽  
Noodchanath Kongchouy

An ideal responsible tourism practice has become the most significant role and principle for modern sustainable tourism development concept. Responsible tourism practice promotes better for tourists visit and enhances the quality of life of host communities in the destination by encouraging ethical consumption and production in all stakeholders. This paper attempted to determine the impact of host communities’ perceived responsible tourism practice on perceived destination sustainability and their quality of life as well as the impact of host communities’ perceived destination sustainability on perceived quality of life. The study was conducted with 355 participants from host communities in Haad Chao Mai Marine National Park, Thailand. Self-administered questionnaires were used to collect the data. The collected data were analyzed by using structural equation modeling (SEM). The results revealed that perceived responsible tourism practice had a significant impact on perceived destination sustainability and perceived quality of life. Additionally, perceived destination sustainability influenced perceived quality of life. As such, embedding responsible tourism practice in destination development plan can enable destination sustainability and better quality of life of host communities and it might make the park successful ecotourism destination.


2019 ◽  
Vol 15 (2) ◽  
pp. 19-38 ◽  
Author(s):  
Sheshadri Chatterjee

In this study, an attempt was taken to identify the issues concerning to regulations and governance which could substantially influence the citizens of India relating to adoption of the Internet of Things. The objective of this study is to highlight the importance of Internet of Things policymaking by the Government of India prescribing proper regulatory frameworks and good governance for effective and successful adoption of the Internet of Things by the citizens of India. An empirical approach has been taken for understanding the impact of IoT policy towards adoption of IoT enabled devices by the citizens of India. Structural equation modeling (SEM) has been used towards analysis of the data collected from three metro cities in India. The study finds out the impact of IoT policy towards adoption of the Internet of Things by the citizens in India and its importance towards improving the quality of life of the citizens of India.


Lupus ◽  
2020 ◽  
Vol 29 (13) ◽  
pp. 1691-1703 ◽  
Author(s):  
Motolani E Ogunsanya ◽  
Sung Kyung Cho ◽  
Andrew Hudson ◽  
Benjamin F Chong

Objectives The purpose of this study was to characterize the impact of cutaneous lupus erythematosus (CLE) in adults and identify the clinical and non-clinical factors associated with quality of life (QoL), using the Revised Wilson and Cleary Model. Methods 101 patients diagnosed with CLE were included in this cross-sectional study. QoL was measured with the Cutaneous Lupus Erythematosus Quality of Life (CLEQoL) scale and disease activity and damage with the Cutaneous Lupus Activity and Severity Index (CLASI). Patient demographics, clinical, and disease characteristics were also collected. Descriptive statistics were calculated, and multiple regression was employed to determine significant (p < 0.05) predictors of overall QoL. Data were analyzed using SPSS v24. Results The overall regression QoL model was significantly different from zero, (F = 24.96; df = 14, 76; p = <0.001). Disease activity (β = 0.13), pain (β = 0.13), fatigue (β = 0.24), body image (β = 0.62), and side effects (β = –0.13) were significant predictors of overall QoL while controlling for other predictor variables. Patients who experienced higher levels of disease activity, fatigue severity, pain levels, and greater degree of body dissatisfaction had significantly poorer QoL. Fewer side effects experienced from CLE medications were significantly associated with higher QoL. Conclusions Study findings support the considerable burden associated with CLE. Several modifiable variables such as pain, fatigue, body image, and disease activity were associated with QoL. Therefore, interventions that incorporate these variables may reduce negative impacts on QoL life and improve health outcomes in CLE patients. Furthermore, given the chronic and recurring nature of the condition, strategies focused on improving QoL are needed for this vulnerable population.


2020 ◽  
pp. 089198872094423
Author(s):  
Marcia Cristina Nascimento Dourado ◽  
Raquel Luiza Santos ◽  
Anna Fischer ◽  
Daniel C. Mograbi

Quality of life (QoL) includes complex interactions between objective and subjective factors. Through structural equation modeling, we analyzed people with Alzheimer disease (PwAD) and carers’ ratings to identify the factors associated with PwAD QoL. We included 264 PwAD and their carers. Model 1, carers’ ratings of PwAD QoL, showed a bidirectional association with worse depressive symptoms, lower functionality, and impairment on awareness being linked. These variables were associated with burden and all of them directly affecting carers’ ratings of PwAD QoL. Model 2, PwAD self-reported QoL, had the same bidirectional associations among the same variables with all of them influencing PwAD self-reported QoL. However, the interpretations of these similar associations should be different. The path analysis increased the understanding of the relationship between QoL and cognition, functionality, mood, awareness, and burden. Our findings bring together a number of consistent predictors and confirm their different effects in PwAD and carers’ point of view about QoL.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 698.2-698
Author(s):  
L. Brites ◽  
F. Costa ◽  
L. Saraiva ◽  
A. R. Cunha ◽  
J. A. P. Da Silva ◽  
...  

Background:Satisfaction with body image has a major impact in quality of life. Systemic sclerosis (SSc) is a can result in disfiguring physical changes.Objectives:Our aim was to determine the impact of systemic sclerosis on body image using the Satisfaction with Appearance Scale (SWAP). (1)Methods:Cross-sectional study including patients satisfying the 2013 American College of Rheumatology criteria for SSc diagnosis, aged ≥ 18 years, treated in a tertiary Rheumatology Department. Demographic and clinical data were collected from Reuma.pt and clinical records. All patients provided informed consent and fulfilled SWAP questionnaire, which consists of 14 questions in 4 subscales: satisfaction with facial appearance, satisfaction with non-facial appearance, social discomfort due to appearance and perceived social impact of appearance. Patients rate each item on a numerical rating scale from 1 (strongly disagree) to 7 (strongly agree). Scores for the facial and non-facial appearance range from 0-24 and scores for the social discomfort and perceived social impact subscales range from 0-18. Total SWAP score can range from 0-84 and higher values indicate greater dissatisfaction with appearance and poorer body image. A descriptive analysis was used to summarize demographic and clinical data; categorical variables were described using frequencies; and continuous data using mean and standard deviation. Correlation between variables [Rodnan, age, disease duration, Hospital Anxiety and Depression Scale (HADS) and Short Form Health Survey (SF36)] and SWAP score was tested with Pearson or Spearman coefficient, as appropriated. Scores of SWAP and its subscales in preclinical, limited and diffuse forms of SSc were compared using ANOVA test. Analyses were performed with SPSS Statistics, V.21 andp<0.05 was considered statistically significant.Results:We enrolled 38 patients, 84.2% (n=32) female, with mean age 60.3±14.5 years and mean disease duration 13.3±6.5 years. All but one were caucasian. Fifty percent (n=19) had a limited form, 26.3% (n=10) had preclinical scleroderma and 23.7% (n=9) had a diffuse form of SSc. Regarding the autoantibody profile: 63.2% (n=24) had anti-centromere antibodies, 28.9% (n=11) had anti-Scl-70 antibodies, 5.3% (n=2) had anti-PM antibodies and 2.6% (n=1) had no positive antibodies. The median of Rodnan scores was 4 (IQR 0-9). The total mean SWAP score was 44.8±12.5 with worse results at “Satisfaction with facial appearance” subscale (mean score 14.4±6.1). There is no statistically significant difference in the SWAP score (or its subscales) between the three diagnosis subtypes. No statistically significant correlation was found between the total and subscale SWAP scores and any of the continuous variables considered and no statistically significant difference was found between the different forms of SSc.Conclusion:We found no significant differences between preclinical, limited or diffused SS. SWAP scores were not significantly correlated with the total Rodnan score, age or disease duration. Contrary to our expectations SWAP did not show any relationship with depression, anxiety (HADS) or quality of Life (SF-36) However, our sample is too small to support definite conclusions. Further studies assessing body image in SSc and its impact in quality of life are warranted to support the holistic care of these patients.References:[1]doi:10.3899/jrheum.141482.;[2]10.1037/0278-6133.22.2.130;[3]10.3899/jrheum.141482.Disclosure of Interests:Luisa Brites: None declared, Flavio Costa: None declared, LILIANA SARAIVA: None declared, Ana Rita Cunha: None declared, José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis, Tânia Santiago: None declared, Maria Joao Salvador: None declared


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