Abstract
Objectives:
Systemic sclerosis often has a significant impact on an individual’s quality of life. Life satisfaction is a subjective expression of well-being and a key component of quality of life. We examined the associations between functional limitations, social support, and spiritual well-being with life satisfaction and investigated the moderating roles of social support and spiritual well-being on the relationship between functional limitations and life satisfaction in people with systemic sclerosis.
Methods:
Data were drawn from the baseline University of California Los Angeles Scleroderma Quality of Life Study. Participants completed questionnaires that included demographics, depressive symptoms, functional limitations, social support, and spiritual well-being. The Satisfaction with Life Scale was used to evaluate overall life satisfaction. Data were analyzed using a hierarchical linear regression.
Results:
Of 206 participants (84% female, 74% White, 52% limited cutaneous subtype, 51% early disease), 38% reported being dissatisfied with their lives. Functional limitations (β = −0.19, p = 0.006), social support (β = 0.18, p = 0.006), and spiritual well-being (β = 0.40, p < 0.001) were associated with life satisfaction, with spiritual well-being emerging as the strongest statistical contributor. However, social support and spiritual well-being did not significantly moderate the relationship between functional limitations and life satisfaction (p = 0.882 and p = 0.339, respectively).
Conclusion:
Spiritual well-being is particularly important in understanding life satisfaction in people with systemic sclerosis. Future longitudinal research is needed to assess and examine spiritual well-being and its impact on life satisfaction in a larger and more diverse systemic sclerosis sample.
Keywords: Functional limitations, social support, spiritual well-being, spirituality, systemic sclerosis, scleroderma
Key messages
Participants with more functional limitations, less social support, and low spirituality report worse life satisfaction.
Spiritual well-being emerged as the strongest statistical contributor to life satisfaction in people with SSc.
Research examining spiritual well-being and health in a more diverse sample over time is warranted.
Introduction
Systemic sclerosis (SSc) is a chronic autoimmune disease that causes inflammation and skin fibrosis and potentially affects internal organ systems. 1 People with SSc often experience disabling symptoms and complications including, but not limited to, joint pain, fatigue, Raynaud’s phenomenon, digital ulcers, gastrointestinal problems, and lung fibrosis, all of which could increase functional limitations and impact quality of life negatively. 2
Quality of life can be evaluated via subjective well-being measurements, including life satisfaction, which measures how people evaluate life in its entirety rather than only specific aspects. 3 Life satisfaction often reflects mental health. 4 Moreover, lower life satisfaction is associated with increased risk of mortality. 5 People who have SSc with functional limitations often experience decreased quality of life; 6 however, research on life satisfaction in this population is limited. Thus, the relationship of functional limitations to life satisfaction remains unclear.
Previous research identified social support could help individuals with SSc cope better with the challenges associated with the disease, 7 with greater social support being associated with lower depressive symptoms in people with SSc. 8 A longitudinal study also showed that social support moderated the association between perceived poor physical health and improvements in pain over time in people with SSc. 9 It is possible that people with greater social support have fewer unmet needs, therefore perceiving positive health outcomes.
Aside from social support, spiritual well-being might help buffer the negative effects of functional limitations to self-perception of health. Spirituality can be defined as a personal search for meaning and purpose in life, which is sometimes coupled with an individual’s spiritual beliefs. 10 Spiritual well-being appears as a protective factor for quality of life in people with cancer. 11 Research involving people with SSc, systemic lupus erythematosus, and skin disorders suggested that spiritual well-being has a positive impact on subjective well-being and should be investigated in future studies. 12 However, previous research only examined spiritual well-being as an independent factor of health-related outcomes. Spiritual well-being could have an impact on how people with functional limitations perceive their life satisfaction.
To address gaps in the literature, the current cross-sectional study aimed to examine the independent associations of functional limitations, social support, and spiritual well-being with life satisfaction, and to investigate whether social support or spiritual well-being moderates the relationship between functional limitations and life satisfaction in people with SSc.
Methods
Participants
The study was conducted as a secondary analysis of baseline data from a sample originating from University of California Los Angeles (UCLA) Scleroderma Quality of Life Study. Patients were eligible if they were at least 18 years old and had physician-diagnosed SSc and were recruited during regular medical appointments. The UCLA Institutional Review Board approved all study procedures (#7-07-061-01).
Measures
Life satisfaction
The Satisfaction with Life Scale (SWLS) uses five items to assess overall life satisfaction: 13 (1) In most ways, my life is close to my ideal; (2) The conditions of my life are excellent; (3) I am satisfied with my life; (4) So far I have gotten the important things I want in life; and (5) If I could live my life over, I would change almost nothing. Levels of satisfaction are estimated on a 7-point Likert-type scale ranging from 1 (Strongly Disagree) to 7 (Strongly Agree). 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 5–19) or satisfied (scores of 20–35) for describing the current sample.
Demographics and SSc characteristics
Participants self-reported their age, sex, race, education level, marital status, and religion. SSc subtype and disease duration since date of diagnosis (categorized as less than 5 years, 5–10 years, more than 10 years) were collected from medical records.
Disease severity
The modified Rodnan skin score (mRSS) is a physician-assessed measure of skin thickening rated from 0 (none) to 3 (severe) in 17 body areas. 14 Total scores range from 0 to 51, with higher scores representing greater disease severity.
Depressive symptoms
The 10-item Center of Epidemiologic Studies Depression Scale (CESD-10) was administered to assess depressive symptoms over the past 7 days. 15 The total score is calculated by totaling all items scored after reverse-scoring two items that are framed positively. Total scores range from 0 to 30, with higher scores suggesting greater severity of depressive symptoms. A cut-off score of 10 or higher indicates presence of significant depressive symptoms. 15
Functional limitations
The Health Assessment Questionnaire-Disability Index (HAQ-DI) was used to measure functional limitations. The HAQ-DI evaluates eight domains: dressing and grooming; arising; eating; walking; hygiene; reach; grip; and outside activity. Participants report level of difficulty in performing each activity on a scale of 0 (no difficulty) to 3 (unable to do). The HAQ-DI is calculated by adding category scores and dividing by the number of categories answered, yielding a disability index from 0 to 3 with higher scores indicating worse functionality. The validity and reliability of HAQ-DI in SSc have been established. 16
Social support
The Medical Outcomes Study Social Support Survey (MOS-SSS) is a 19-item multidimensional survey measuring social support in chronic health conditions. 17 Scores range from 1 (none of the time) to 5 (all of the time). Scores are transformed to a 0 to 100 scale, with higher scores indicating greater social support.
Spiritual well-being
The 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), including meaning in life, peacefulness, and a sense of strength and comfort from one’s faith evaluates spirituality. 10 The questionnaire uses a 0 (not at all) to 4 (very much) scale. The total score was calculated by totaling all items scored after reversing two items, which were worded negatively. Total scores range from 0 to 48, with higher scores indicating greater spiritual well-being.
Statistical analysis
Categorical variables were analyzed by proportions while continuous variables were described with means and standard deviations. Mean life satisfaction scores across different demographics, SSc characteristics, and depressive symptom groups were compared using independent sample t-tests or one-way analyses of variance with Tukey’s post hoc analysis.
We performed a four-step hierarchical regression analysis to determine the independent associations of functional limitations, social support, and spiritual well-being with life satisfaction and, via interaction terms, to examine the moderating roles of social support and spiritual well-being on the relationship between functional limitations and life satisfaction. In step 1, demographic variables were entered as covariates that would potentially impact life satisfaction. In step 2, SSc-related variables and depressive symptoms were added. In step 3, functional limitations, social support, and spiritual well-being were simultaneously entered for the purpose of evaluating their unique contributions to the variance in life satisfaction. Step 4 involved the entry of the interaction terms (Functional Limitations × Social Support and Functional Limitations × Spiritual Well-being) to test moderation effects. Because possible score ranges for functional limitations, social support, and spiritual well-being differ, these variables were converted into standardized scores and interaction terms were created using these standardized scores prior to regression analyses. The statistical significances were tested at p < 0.05. All analyses were conducted in SPSS version 27 (IBM, Armonk, NY, USA).
Results
Table 1 shows sample characteristics in relation to life satisfaction. The overall mean for life satisfaction is 22.9 ± 7.8 in the current sample. Of 206 SSc participants (mean age = 51.0 ± 14.4 years), 79 (38%) were classified as dissatisfied while 127 (62%) were classified as satisfied. The majority were female (84%) and White (74%). More than half (52%) had limited cutaneous SSc and over half (51%) had early disease, within 5 years of SSc diagnosis. Unmarried participants reported lower life satisfaction scores than married participants (20.0 ± 7.7 and 23.5 ± 7.7, respectively, t = −3.2, p = 0.001). Participants with depressive symptoms reported lower life satisfaction than those without depressive symptoms (15.9 ± 6.5 and 25.2 ± 6.5, respectively, t = 9.8, p < 0.001). Perceived life satisfaction differed significantly based on race (F (3,198) = 3.7, p = 0.013) ‒ racial minorities, including Black (18.2 ± 8.0), Asian (20.6 ± 8.0), and American Indian/Alaskan Native/others (17.8 ± 9.2), reported lower life satisfaction when compared with White participants (23.0 ± 7.5). Individuals who had SSc for more than 10 years (20.1 ± 7.6) reported lower life satisfaction score than did those who had SSc for fewer than 5 years (23.4 ± 7.4) or 5–10 years (20.8 ± 8.5), F(2,201) = 3.63, p = 0.028. Life satisfaction scores did not differ based on sex, education, religion, or SSc subtype.
Table 1.
Participant characteristics in relation to life satisfaction (N = 206).
| Variable | n (%) | Life satisfaction Mean (SD) |
F or t score | p |
|---|---|---|---|---|
| Sex | 0.532 | |||
| Female | 171 (83.8) | 21.8 (7.7) | −0.6 | |
| Male | 33 (16.2) | 22.8 (8.9) | ||
| Race | 3.7 | 0.013 | ||
| White | 149 (73.8) | 23.0 (7.5) | ||
| Black | 13 (6.4) | 18.2 (8.0) | ||
| Asian | 24 (11.9) | 20.6 (8.0) | ||
| American Indian, Alaskan Native, or Other | 16 (7.9) | 17.8 (9.2) | ||
| Education level | 2.0 | 0.137 | ||
| High school graduate or less | 34 (16.8) | 20.6 (7.8) | ||
| Some college | 73 (36.1) | 21.3 (7.4) | ||
| College graduate or higher | 95 (47.0) | 23.2 (8.0) | ||
| Marital status | −3.2 | 0.001 | ||
| Non-married | 87 (42.9) | 20.0 (7.7) | ||
| Married | 116 (57.1) | 23.5 (7.7) | ||
| Religion | <0.001 | 1.000 | ||
| Non-Christian | 79 (38.3) | 22.0 (8.3) | ||
| Christian | 115 (55.8) | 22.0 (7.7) | ||
| SSc subtype | 1.6 | 0.214 | ||
| Diffuse | 82 (41.8) | 21.3 (7.6) | ||
| Limited | 101 (51.5) | 22.9 (8.1) | ||
| Overlap or other | 13 (6.6) | 19.8 (7.2) | ||
| SSc duration | 3.6 | 0.028 | ||
| Less than 5 years | 103 (50.5) | 23.4 (7.4) | ||
| 5–10 years | 59 (28.9) | 20.8 (8.5) | ||
| More than 10 years | 42 (20.6) | 20.1 (7.6) | ||
| Depressive symptoms | 9.8 | < 0.001 | ||
| Not depressed | 133 (65.2) | 25.2 (6.5) | ||
| Depressed | 71 (34.8) | 15.9 (6.5) | ||
SD: standard deviation; SSc: systemic sclerosis.
Group differences were examined using independent sample t-test or one-way analysis of variance.
Table 2 displays the results of the hierarchical regression analysis. Step 1 indicated that 12% of the variance in life satisfaction was significantly explained by demographic variables, F(9, 154) = 2.35, p = 0.016. In step 2, the combination of SSc characteristics and depressive symptoms led to an additional 29% of the explained variance in life satisfaction, F(15, 148) = 6.93, p < 0.001. In step 3, functional limitations, social support, and spiritual well-being explained an additional 16% of variance in life satisfaction, F(18, 145) = 10.56, p < 0.001. Functional limitations were negatively associated with worse life satisfaction (β = −0.19, p = 0.006), whereas social support and spiritual well-being were positively associated with life satisfaction (β = 0.18, p = 0.006 and β = 0.40, p < 0.001, respectively), with spiritual well-being emerging as the strongest contributor. In step 4, results showed that neither interaction term (i.e. Functional Limitations × Social Support and Functional Limitations × Spiritual Well-being) was significantly associated with life satisfaction (p = 0.882 and p = 0.339, respectively).
Table 2.
Hierarchical regression analysis results, with life satisfaction as the dependent variable (N = 206).
| Variable | Step 1 β |
Step 2 β |
Step 3 β |
Step 4 β |
|---|---|---|---|---|
| Age | 0.08 | 0.08 | 0.09 | 0.09 |
| Sex | ||||
| Female (reference) | ||||
| Male | −0.01 | 0.06 | 0.07 | 0.08 |
| Race | ||||
| White | 0.21 | 0.13 | 0.07 | 0.06 |
| Black | < 0.001 | −0.06 | −0.14 | −0.15 |
| Asian | 0.12 | 0.06 | < 0.001 | −0.01 |
| American Indian, Alaskan Native, or Other (reference) | ||||
| Education level | ||||
| High school graduate or less (reference) | ||||
| Some college | 0.13 | 0.07 | 0.10 | 0.11 |
| College graduate or higher | 0.19 | 0.11 | 0.17 | 0.19* |
| Marital status | ||||
| Not married (reference) | ||||
| Married | 0.22** | 0.13 | 0.09 | 0.09 |
| Religion | ||||
| Non-Christian (reference) | ||||
| Christian | 0.02 | 0.03 | −0.03 | −0.02 |
| SSc subtype | ||||
| Diffuse | 0.15 | 0.11 | 0.09 | |
| Limited | 0.16 | 0.08 | 0.06 | |
| Overlap or other (reference) | ||||
| SSc duration | ||||
| Less than 5 years | 0.27** | 0.18* | 0.18* | |
| 5–10 years | 0.06 | 0.06 | 0.06 | |
| More than 10 years (reference) | ||||
| mRSS | −0.09 | −0.02 | −0.02 | |
| Depressive symptoms | ||||
| Not depressed (reference) | ||||
| Depressed | −0.48** | −0.16* | −0.16* | |
| Functional limitations | −0.19** | −0.18** | ||
| Social support | 0.18** | 0.19** | ||
| Spiritual well-being Functional Limitations × Social Support Functional Limitations × Spiritual Well-being |
0.40** | 0.40** −0.01 −0.06 |
||
| R 2 | 0.12 | 0.41 | 0.57 | 0.57 |
| R2 change | 0.12 | 0.29 | 0.16 | 0.004 |
SSc: systemic sclerosis; mRSS: modified Rodnan skin score.
p < 0.05.**p < 0.01.
Discussion
This study examined factors associated with life satisfaction in SSc. Here, 38% of participants reported being dissatisfied with their lives. Consistent with previous studies6,8,12 functional limitations, social support, and spiritual well-being were significantly associated with subjective well-being, measured here by life satisfaction. Spiritual well-being emerged as the strongest statistical contributor to life satisfaction. A psychoeducational intervention adapting spirituality components concluded that strategies such as goal setting and relaxation helped people with SSc reduce helplessness and led to greater acceptance of impairment due to SSc. 18 As such, examining various spirituality strategies and their impacts on life satisfaction in people with SSc in longitudinal studies remains important.
This study examined whether social support and spiritual well-being moderated the relationship between functional limitations and life satisfaction. Although previous research suggested that social support could reduce the effects of perceived poor physical health on pain, 9 social support was not a moderator in the relationship between functional limitations and life satisfaction in the current study. Perhaps social support for people with SSc leads to perceptions of loss of independence. 2 In addition, people with SSc sometimes avoid social activities due to their SSc-related symptoms; 2 thus, social support might be viewed negatively. Consistent with existing literature Salsman et al. 11 and Pilch et al., 12 we found that spiritual well-being was associated with life satisfaction, but that the value of spiritual well-being did not vary across levels of functional limitations.
This study had several limitations. These included self-reported measurements except skin severity score; cross-sectional design so that causality cannot be determined; a convenience sample of individuals with SSc who attended regular medical appointments at a single center. 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. Along those lines, the sample largely consisted of female and white participants; the results might not be generalizable to boarder SSc populations.
Conclusion
The findings suggest that functional limitations, social support, and especially spiritual well-being are all associated with subjective well-being in people with SSc. Besides regular assessment of functional limitations, future research examining how social support and spiritual well-being relate to life satisfaction over time is warranted. Future research would additionally benefit from engaging a larger, diverse sample, to increase generalizability.
Footnotes
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. D.K. is a consultant to Acceleron, Abbvie, Actelion, Amgen, Bayer, BMS, Boehringer Ingelheim, CSL Behring, Corbus, Galapagos, Genentech/Roche, GSK, Horizon, Mitsubishi Tanabe Pharma, Sanofi-Aventis, and United Therapeutics. He has stock options in Eicos Sciences, Inc. Dr. D.E.F. has received grant/research support from Emerald, Kadmon, PICORI, Pfizer, Prometheus, Talaris, Mitsubishi, and he is a consultant to Abbvie, Novartis, and Pfizer. Dr. S.K. has received research/consultation funding from Actelion, Bayer, Biogen, BMS, Corbus, Cumberland, Emerald health, Galapagos, Horizon, Genentech/ Roche, Novartis, and Mitsubishi Tanabe. Other authors have no conflict of interest to disclose. The statement: The Editor/ Editorial Board Member of JSRD is an author of this paper, therefore, the peer review process was managed by alternative members of the Board and the submitting Editor/Board member had no involvement in the decision-making process.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Y.T.C. is supported by a postdoctoral fellowship award funded by the University of Michigan’s Advanced Rehabilitation Research Training Program in Community Living and Participation from the National Institute of Disability, Independent Living, and Rehabilitation Research, Administration for Community Living (grant # 90ARCP0003, Co-PI Murphy); Dr. D.K.’s work was supported by the NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases (K24-AR-063129).
ORCID iDs: Yen T Chen 
https://orcid.org/0000-0001-7723-6431
Susan L Murphy https://orcid.org/0000-0001-7924-0012
Dinesh Khanna https://orcid.org/0000-0001-6822-3401
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