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

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.

Factors associated with life satisfaction in systemic sclerosis: Examining the moderating roles of social support and spiritual well-being

“…Further, psychological factors, such as personality traits and resilience, were not examined in this study, but are potential determinants of happiness and enjoyment of life that may influence the perceived impact of disease. 19,20 Although spiritual well-being was significantly associated with life satisfaction, some items of spiritual well-being (e.g. My life has been productive) overlap conceptually with life satisfaction.…”

“…Item scores are summed, and the measure is scored from 5 (Extremely Dissatisfied) to 35 (Extremely Satisfied). The total score was dichotomized into either dissatisfied (scores of [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19] or satisfied (scores of [20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35] for describing the current sample.…”

Skin ultrasound in systemic sclerosis: past, present and exciting future

“…Skin involvement is a hallmark feature of this disease and has a particular relevance for classification criteria, diagnosis, identification of disease subsets, prediction of disease progression and patient perception of disease impact [ 1 ]. Skin changes often result in pain, body image disfigurement and dissatisfaction and functional limitation, contributing greatly to the disease impact upon health-related quality of life and overall life satisfaction [ 2 ].…”

“…Currently, the assessment of skin thickness is performed, both in clinical practice and in clinical trials, by means of a semi-quantitative score that consists of palpation of the skin at 17 sites to give the modified Rodnan skin score (mRSS) [ 3 ]. Despite its simplicity and fair validity, this method has several important limitations, including its dependence on rater experience and training, high intra- and inter-observer variability and low sensitivity to change [ 2 ].…”