Lupus (2015) 24, 122–129 http://lup.sagepub.com
PAPER
Social capital: a novel platform for understanding social determinants of health in systemic lupus erythematosus SS Kim1, CA Mancuso2, W-T Huang2 and D Erkan2 1
Department of Rheumatology, Lehigh Valley Health Network, USA; and 2Department of Rheumatology, Hospital for Special Surgery, USA
Objective: The objective of this paper is to introduce the concept of social capital as a unique and distinct entity from the traditional psychosocial factors of social support, depressive symptoms, and self-efficacy in systemic lupus erythematosus (SLE) patients, and to evaluate how social capital varies in an SLE sample according to demographic, clinical, and psychosocial variables. Methods: In a cross-sectional study, SLE patients completed the Adapted Social Capital Assessment Tool (A-SCAT), which measures cognitive and structural social capital. Patients also completed measures of social support, depressive symptoms, and SLE self-efficacy. Correlations were evaluated between social capital scores and demographic, clinical, and psychosocial variables. Results: We recruited 89 patients (mean age: 39 15 years old, 83 (93): female; mean SLEDAI: 4; mean SLICC 1). The mean A-SCAT score was 34 15 (normal: 0–71); higher scores were associated with female sex, older age, higher education, Caucasian race, and non-Medicaid insurance (p 0.03 for all); associations were attributable to structural social capital. Social capital was not associated with depressive symptoms, selfefficacy, or affectionate and interaction social support, but was associated with informational and tangible social support (r ¼ 0.39, r ¼ 0.26, respectively, p 0.02). There were no associations between SLEDAI and SLICC and social capital, social support, and depressive symptoms. Conclusions: Social capital is a novel construct that, like other traditional psychosocial measures, addresses aspects of SLE not reflected by markers of disease activity. Social capital, however, is distinct from traditional psychosocial measures and offers a new platform on which ideas of social connectedness can broaden our understanding of health and chronic illness. Lupus (2015) 24, 122–129. Key words: Systemic lupus erythematous; social health; social network; social support
Introduction A ‘‘call for public action’’ for management of chronic illness has emerged in the forefront of public health discourse with topics ranging from patient-centered, disease-specific interventions to community-based, public health interventions.1 A task to obtain a broader understanding for the social determinants of health has made relevant the concept of social capital. While precise definitions and models of social capital may differ through each disciplinary lens, the common thread is the idea that features of social structure, the degree of social connectedness, and the quality Correspondence to: Susan S Kim, Department of Rheumatology, Lehigh Valley Health Network, 3080 Hamilton Blvd., Allentown, PA 18103, USA. Email: [email protected] Received 23 February 2014; accepted 12 August 2014 ! The Author(s), 2014. Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav
and quantity of social relations are important determinants for health outcomes. Social capital is defined as the stock of social connectedness fostered through personal networks and through features of social organization, such as norms of reciprocity, sense of trust, and civic engagement, that enable productive outcomes.2 Social capital can be deconstructed into two components, structural and cognitive, to reflect concepts of community- and individual-level social capital, respectively.3 The structural component reflects access to resources generated by the extent and quality of activity and structure of a community, whereas the cognitive component reflects the ‘‘less tangible’’ side of social capital referring to the values, beliefs, attitudes, behaviors and social norms that are shared among members of a community.4–6 The framework of social capital has been used to describe associations between social networks and health in the context of population 10.1177/0961203314550224
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health, health inequalities, and individual health outcomes.6–10 Certain elements of social capital, defined by membership in voluntary organizations, have been linked to overall mortality, health behaviors, mental health, and self-rated health on a population level.11–17 These studies suggest that social capital has a protective quality on health. In systemic lupus erythematosus (SLE) marked health disparities exist based on fixed, non-modifiable features such as genetic makeup and socioeconomic and geographic characteristics, as well as potentially modifiable factors related to healthrelated behaviors, psychosocial factors, and utilization of care.18–22 Individuals with SLE often face a chronic and unpredictable disease course, and for many, psychosocial factors such as depressive symptoms, self-efficacy, and levels of social support influence the severity of SLE-related disease activity, physical functioning, and health-related quality of life.23–25 Beyond the impact of these psychosocial variables that are intrinsic to the individual, there are effects of extrinsic variables such as neighborhood socioeconomic status that affect the physical and mental health outcomes in SLE patients.23,24 The concept of geographic and area-level factors affecting SLE outcomes highlights the framework in which social capital may play a health determinant role in health outcomes beyond individual-level variables. Within this disease framework, in which the interplay of fixed (genetic, hormonal, biologic) and potentially modifiable (education, depression, adherence) factors contribute to health outcomes, we argue that social capital is an important variable to understand how the quality and extent of social connectedness affects health, beyond the effects of social support and other psychosocial factors.18 Our objective is to introduce the concept of social capital as a unique and distinct entity from the traditional psychosocial factors in SLE patients. Our goal was to compare social capital, as measured by the Adapted Social Capital Assessment Tool (A-SCAT), to previously conceptualized psychosocial measures, such as social support, depressive symptoms, and self-efficacy.26
Patients and methods We conducted a cross-sectional study of a convenience sample of SLE patients at the Hospital for Special Surgery (HSS). The institutional review board at HSS approved this study and all participants provided written informed consent. Patients were eligible if they met four of 11 American
College of Rheumatology (ACR) 1997 classification criteria for SLE and if they were 18 years of age or older at the time of the assessment.27 Patients were approached at the time of a routine office visit and were asked to participate. If they agreed they completed a battery of psychosocial measures described below and a survey measuring social capital. Study personnel were available to answer questions and verify completeness of the questionnaires. Medical records were reviewed to ascertain SLE criteria, accumulated disease damage using the Systemic Lupus International Collaborating Clinics (SLICC) damage index, and current disease activity reported with the Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA) version of the SLE Disease Activity Index (SLEDAI).28 Social capital was measured by the A-SCAT, a concise version of the Social Capital Assessment Tool (SCAT) developed by researchers of the World Bank for its international initiatives.4,26,29 The 54-item scale incorporates concepts of structural and cognitive social capital. The structural social capital domain consists of nine sections including group membership, connections to institutions or groups, collective action, and degree of citizenship. Questions in this domain ask about membership and participation in community and neighborhood groups, frequency of social gatherings, participation in voting and campaigning, and engagement with community members and local authorities. The cognitive social capital domain consists of 10 sections including trust in various members of the community and availability of emotional, instrumental, and informational social support. Questions in this domain ask about a sense of belonging, perceived fairness, reciprocity and cooperation. Responses to individual questions are summed to generate total scores that can range from 0 to 38 for the structural domain and from 0 to 33 for the cognitive domain; higher scores indicate more social capital. An overall score can be calculated as the sum of the domain scores and can range from 0 to 71. Patients were asked about traditional psychosocial variables with other validated scales. Perceived social support was measured with the 20-item Medical Outcomes Study (MOS) Social Support Survey, which assesses informational, tangible, affectionate, and positive social interaction subscales of social support as well as the size of one’s social network.30 A score is generated for each subscale and an overall score ranging from 0 to 100 with higher scores indicating more availability of that type of support. Depressive Lupus
Social capital: a novel platform for understanding social determinants of health in SLE SS Kim et al.
124
symptoms were measured with the 20-item Center for Epidemiologic Studies Depression Scale (CESD) scale.31 Scores can range from 0 to 60 with higher scores indicating more depressive symptoms; a score of 16 is considered a positive screen for depression.32 The CES-D has been used extensively in patients with SLE.23,33–35 Perceived self-efficacy was measured with the Self-Efficacy for Managing Chronic Disease 6-Item Scale, adapted from the Chronic Disease Self-Efficacy Scales, which evaluates optimistic self-beliefs used to cope with daily demands of chronic disease management.36 An overall score can range from 1 to 10 and a higher score indicates more self-efficacy. Questions were framed specifically about self-efficacy for managing SLE and have been used by prior lupus researchers.37
Statistical analysis Cognitive, structural and overall social capital scores were calculated and compared according to demographic (age, sex, race, ethnicity, marital status), socioeconomic (insurance, education, employment), and SLE-clinical (disease activity, damage, disease duration) characteristics using analysis of variance (ANOVA). Similar analyses were carried out for scores for the subscales and overall MOS Social Support Scale, the SelfEfficacy for Managing Chronic Disease Scale, and the CES-D Scale. Associations between social capital scores and social support, self-efficacy, and depressive symptoms scores were assessed with Pearson correlation coefficients.
Results In total 112 patients were eligible, 89 patients were enrolled, 12 refused to participate for lack of interest, and 11 refused to participate because of time conflicts. Our sample was 93% women, the mean age was 39 years, 31% were Caucasians, 36% were African American, and 7% were Asian (Table 1). Approximately one-quarter were currently employed and 34% were work disabled; 47% were privately insured and 53% were Medicaid recipients; and 78% had completed high school. The mean duration of SLE was 12 8 years, and the average age at diagnosis was 27 14 years; all patients met at least four of 11 ACR SLE criteria; the majority were antinuclear antibody (ANA) Lupus
Table 1 Demographic characteristics Demographic features (n ¼ 89)
Values
Age (mean SD) Women, %(n) Race, %(n) Caucasian African American Asian Other Hispanic, %(n) Marital status, %(n) Single Married Divorced Widowed Unknown Insurance, %(n) Privatea Medicaidb Education, %(n) High school or less Vocational/trade/some college Bachelor’s degree Postgraduate Unknown Employment, %(n) Employed Unemployed Disability Unknown Annual household income $100 K Unknown
39 15 93 (83) 31 36 7 26 60
(28) (32) (6) (23) (53)
62 27 8 2 1
(55) (24) (7) (2) (1)
47 (42) 53 (47) 22 30 24 20 3
(20) (27) (21) (18) (3)
28 35 34 3
(25) (31) (30) (3)
60 8 11 9 11 1
(53) (7) (10) (8) (10) (1)
a
Includes Medicare (based on age, n ¼ 1), Veterans Affairs (n ¼ 1), privately purchased (n ¼ 1). b Includes Medicare (based on dialysis/disability, n ¼ 2), uninsured (n ¼ 3).
positive (96%) and had inflammatory arthritis (94%) (Table 2). The mean and median structural social capital score was 17, range 1 to 38, and the interquartile range was 9 to 23 (Table 2). The mean and median cognitive social capital score was 17, range 0 to 54, interquartile range 11 to 21. The mean and median overall social capital score was 34, range 3 to 71, and the interquartile range was 22 to 44. The correlation between the structural and cognitive social capital domains was r ¼ 0.57 (p < 0.0001). With respect to individual sections of the social capital scale, 53% of patients (n ¼ 47) reported being a member of a group or organization and 51% (n ¼ 45) considered themselves to be active participants in the group. Types of groups included
Social capital: a novel platform for understanding social determinants of health in SLE SS Kim et al.
125
Table 2 Clinical and psychosocial characteristics Systemic lupus erythematosus characteristics Duration of disease (years) mean SD median Age at diagnosis (years) mean SD median Number of ACRa criteria fulfilled (mean SD) Malar rash, % (n) Discoid rash, % (n) Photosensitivity, % (n) Ulcers, % (n) Arthritis, % (n) Serositis, % (n) Renal disorder, % (n) Neurologic disorder, % (n) Hematologic disorder, % (n) Immunologic disorder, % (n) Antinuclear antibodies, % (n) SELENA-SLEDAIb score mean SD median SLICCc/ACRa Damage Index mean SD median Psychosocial measures Social Capital Score (A-SCATd) scores (mean SD) Structural domain Cognitive domain Overall CES-De score (mean SD) MOSf-Social Support Survey scores (mean SD) Informational subscale Tangible subscale Affectionate subscale Positive social interaction subscale Overall Self-efficacy scoreg (mean SD)
Values
12 8 11 27 14 25 61 56 (50) 10 (9) 24 (21) 28 (25) 94 (84) 45 (40) 38 (34) 16 (14) 40 (36) 76 (68) 96 (85) 43 4 12 1 34 15 17 9 17 8 34 15 22 13 66 27 64 28 63 34 72 31 67 31 66 27 52
a
American College of Rheumatology. Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA)-SLE Disease Activity Index (SLEDAI). c Systemic Lupus International Collaborating Clinics (SLICC). d A-SCAT: Adapted Social Capital Assessment Tool. e Center for Epidemiologic Studies Depression Scale (CES-D). f Medical Outcomes Study (MOS). g Self-Efficacy for Managing Chronic Disease 6-Item Scale. b
religious 21% (n ¼ 19), work-related 18% (n ¼ 16), education-related 15% (n ¼ 13), health-related 15% (n ¼ 13), and neighborhood associations 11% (n ¼ 10). Regarding a sense of community responsibility in terms of joining together for common issues, 72% (n ¼ 64) felt that collective action was a realistic and feasible option; 36% (n ¼ 32) indicated they had participated in collective action to address common neighborhood issues; and 80% (n ¼ 71) indicated they participated in citizenship activities such as voting, participating in social or
political demonstrations, and talking with authorities about local issues. Overall, 48% (n ¼ 43) responded having ‘‘someone in the neighborhood’’ that they could rely on, either for emotional 54% (n ¼ 48), instrumental 22% (n ¼ 20), and informational 44% (n ¼ 39) support; however, only 38% (n ¼ 34) reported they felt part of their neighborhood. The mean and median CES-D scores were 22 and 19, respectively, range 2 to 48, the interquartile range was 11 to 31, and 63% (n ¼ 56) had a positive screen for depression (Table 2). The mean MOS Social Support Survey scores for each of the subscales were 64 for informational, 63 for tangible, 72 for affectionate, and 67 for the positive social interaction. The mean and median overall MOS Social Support Survey scores were 66 and 72, respectively, range 0–100. The mean and median Self-Efficacy Scale score was 5, range 2 to 8, and the interquartile range was 4 to 7. Social capital and psychosocial scores were compared according to demographic, socioeconomic, and SLE-related clinical features (Table 3). Patients were more likely to have higher overall social capital scores if they were older, female, Caucasian, had more education, and had nonMedicaid insurance. Hispanic ethnicity, marital status, and employment status were not associated with social capital. Lupus disease activity, damage, and duration also were not associated with social capital. In sub-analyses according to social capital domain, the associations with age, sex, race, insurance and educational attainment were mainly driven by the structural social capital scores (Table 3). With respect to depressive symptoms, there were no differences in CES-D scores according to demographic and clinical subgroups (data not shown). With respect to self-efficacy, patients who were younger, currently employed, privately insured, and had lower SLE disease activity (as defined by SELENA-SLEDAI High school (66) 36 14b Employment status, (n) Unemployed (64) 32 16 Employed (25) 38 12 SELENA-SLEDAId (n)
PAPER
Social capital: a novel platform for understanding social determinants of health in systemic lupus erythematosus SS Kim1, CA Mancuso2, W-T Huang2 and D Erkan2 1
Department of Rheumatology, Lehigh Valley Health Network, USA; and 2Department of Rheumatology, Hospital for Special Surgery, USA
Objective: The objective of this paper is to introduce the concept of social capital as a unique and distinct entity from the traditional psychosocial factors of social support, depressive symptoms, and self-efficacy in systemic lupus erythematosus (SLE) patients, and to evaluate how social capital varies in an SLE sample according to demographic, clinical, and psychosocial variables. Methods: In a cross-sectional study, SLE patients completed the Adapted Social Capital Assessment Tool (A-SCAT), which measures cognitive and structural social capital. Patients also completed measures of social support, depressive symptoms, and SLE self-efficacy. Correlations were evaluated between social capital scores and demographic, clinical, and psychosocial variables. Results: We recruited 89 patients (mean age: 39 15 years old, 83 (93): female; mean SLEDAI: 4; mean SLICC 1). The mean A-SCAT score was 34 15 (normal: 0–71); higher scores were associated with female sex, older age, higher education, Caucasian race, and non-Medicaid insurance (p 0.03 for all); associations were attributable to structural social capital. Social capital was not associated with depressive symptoms, selfefficacy, or affectionate and interaction social support, but was associated with informational and tangible social support (r ¼ 0.39, r ¼ 0.26, respectively, p 0.02). There were no associations between SLEDAI and SLICC and social capital, social support, and depressive symptoms. Conclusions: Social capital is a novel construct that, like other traditional psychosocial measures, addresses aspects of SLE not reflected by markers of disease activity. Social capital, however, is distinct from traditional psychosocial measures and offers a new platform on which ideas of social connectedness can broaden our understanding of health and chronic illness. Lupus (2015) 24, 122–129. Key words: Systemic lupus erythematous; social health; social network; social support
Introduction A ‘‘call for public action’’ for management of chronic illness has emerged in the forefront of public health discourse with topics ranging from patient-centered, disease-specific interventions to community-based, public health interventions.1 A task to obtain a broader understanding for the social determinants of health has made relevant the concept of social capital. While precise definitions and models of social capital may differ through each disciplinary lens, the common thread is the idea that features of social structure, the degree of social connectedness, and the quality Correspondence to: Susan S Kim, Department of Rheumatology, Lehigh Valley Health Network, 3080 Hamilton Blvd., Allentown, PA 18103, USA. Email: [email protected] Received 23 February 2014; accepted 12 August 2014 ! The Author(s), 2014. Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav
and quantity of social relations are important determinants for health outcomes. Social capital is defined as the stock of social connectedness fostered through personal networks and through features of social organization, such as norms of reciprocity, sense of trust, and civic engagement, that enable productive outcomes.2 Social capital can be deconstructed into two components, structural and cognitive, to reflect concepts of community- and individual-level social capital, respectively.3 The structural component reflects access to resources generated by the extent and quality of activity and structure of a community, whereas the cognitive component reflects the ‘‘less tangible’’ side of social capital referring to the values, beliefs, attitudes, behaviors and social norms that are shared among members of a community.4–6 The framework of social capital has been used to describe associations between social networks and health in the context of population 10.1177/0961203314550224
Social capital: a novel platform for understanding social determinants of health in SLE SS Kim et al.
123
health, health inequalities, and individual health outcomes.6–10 Certain elements of social capital, defined by membership in voluntary organizations, have been linked to overall mortality, health behaviors, mental health, and self-rated health on a population level.11–17 These studies suggest that social capital has a protective quality on health. In systemic lupus erythematosus (SLE) marked health disparities exist based on fixed, non-modifiable features such as genetic makeup and socioeconomic and geographic characteristics, as well as potentially modifiable factors related to healthrelated behaviors, psychosocial factors, and utilization of care.18–22 Individuals with SLE often face a chronic and unpredictable disease course, and for many, psychosocial factors such as depressive symptoms, self-efficacy, and levels of social support influence the severity of SLE-related disease activity, physical functioning, and health-related quality of life.23–25 Beyond the impact of these psychosocial variables that are intrinsic to the individual, there are effects of extrinsic variables such as neighborhood socioeconomic status that affect the physical and mental health outcomes in SLE patients.23,24 The concept of geographic and area-level factors affecting SLE outcomes highlights the framework in which social capital may play a health determinant role in health outcomes beyond individual-level variables. Within this disease framework, in which the interplay of fixed (genetic, hormonal, biologic) and potentially modifiable (education, depression, adherence) factors contribute to health outcomes, we argue that social capital is an important variable to understand how the quality and extent of social connectedness affects health, beyond the effects of social support and other psychosocial factors.18 Our objective is to introduce the concept of social capital as a unique and distinct entity from the traditional psychosocial factors in SLE patients. Our goal was to compare social capital, as measured by the Adapted Social Capital Assessment Tool (A-SCAT), to previously conceptualized psychosocial measures, such as social support, depressive symptoms, and self-efficacy.26
Patients and methods We conducted a cross-sectional study of a convenience sample of SLE patients at the Hospital for Special Surgery (HSS). The institutional review board at HSS approved this study and all participants provided written informed consent. Patients were eligible if they met four of 11 American
College of Rheumatology (ACR) 1997 classification criteria for SLE and if they were 18 years of age or older at the time of the assessment.27 Patients were approached at the time of a routine office visit and were asked to participate. If they agreed they completed a battery of psychosocial measures described below and a survey measuring social capital. Study personnel were available to answer questions and verify completeness of the questionnaires. Medical records were reviewed to ascertain SLE criteria, accumulated disease damage using the Systemic Lupus International Collaborating Clinics (SLICC) damage index, and current disease activity reported with the Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA) version of the SLE Disease Activity Index (SLEDAI).28 Social capital was measured by the A-SCAT, a concise version of the Social Capital Assessment Tool (SCAT) developed by researchers of the World Bank for its international initiatives.4,26,29 The 54-item scale incorporates concepts of structural and cognitive social capital. The structural social capital domain consists of nine sections including group membership, connections to institutions or groups, collective action, and degree of citizenship. Questions in this domain ask about membership and participation in community and neighborhood groups, frequency of social gatherings, participation in voting and campaigning, and engagement with community members and local authorities. The cognitive social capital domain consists of 10 sections including trust in various members of the community and availability of emotional, instrumental, and informational social support. Questions in this domain ask about a sense of belonging, perceived fairness, reciprocity and cooperation. Responses to individual questions are summed to generate total scores that can range from 0 to 38 for the structural domain and from 0 to 33 for the cognitive domain; higher scores indicate more social capital. An overall score can be calculated as the sum of the domain scores and can range from 0 to 71. Patients were asked about traditional psychosocial variables with other validated scales. Perceived social support was measured with the 20-item Medical Outcomes Study (MOS) Social Support Survey, which assesses informational, tangible, affectionate, and positive social interaction subscales of social support as well as the size of one’s social network.30 A score is generated for each subscale and an overall score ranging from 0 to 100 with higher scores indicating more availability of that type of support. Depressive Lupus
Social capital: a novel platform for understanding social determinants of health in SLE SS Kim et al.
124
symptoms were measured with the 20-item Center for Epidemiologic Studies Depression Scale (CESD) scale.31 Scores can range from 0 to 60 with higher scores indicating more depressive symptoms; a score of 16 is considered a positive screen for depression.32 The CES-D has been used extensively in patients with SLE.23,33–35 Perceived self-efficacy was measured with the Self-Efficacy for Managing Chronic Disease 6-Item Scale, adapted from the Chronic Disease Self-Efficacy Scales, which evaluates optimistic self-beliefs used to cope with daily demands of chronic disease management.36 An overall score can range from 1 to 10 and a higher score indicates more self-efficacy. Questions were framed specifically about self-efficacy for managing SLE and have been used by prior lupus researchers.37
Statistical analysis Cognitive, structural and overall social capital scores were calculated and compared according to demographic (age, sex, race, ethnicity, marital status), socioeconomic (insurance, education, employment), and SLE-clinical (disease activity, damage, disease duration) characteristics using analysis of variance (ANOVA). Similar analyses were carried out for scores for the subscales and overall MOS Social Support Scale, the SelfEfficacy for Managing Chronic Disease Scale, and the CES-D Scale. Associations between social capital scores and social support, self-efficacy, and depressive symptoms scores were assessed with Pearson correlation coefficients.
Results In total 112 patients were eligible, 89 patients were enrolled, 12 refused to participate for lack of interest, and 11 refused to participate because of time conflicts. Our sample was 93% women, the mean age was 39 years, 31% were Caucasians, 36% were African American, and 7% were Asian (Table 1). Approximately one-quarter were currently employed and 34% were work disabled; 47% were privately insured and 53% were Medicaid recipients; and 78% had completed high school. The mean duration of SLE was 12 8 years, and the average age at diagnosis was 27 14 years; all patients met at least four of 11 ACR SLE criteria; the majority were antinuclear antibody (ANA) Lupus
Table 1 Demographic characteristics Demographic features (n ¼ 89)
Values
Age (mean SD) Women, %(n) Race, %(n) Caucasian African American Asian Other Hispanic, %(n) Marital status, %(n) Single Married Divorced Widowed Unknown Insurance, %(n) Privatea Medicaidb Education, %(n) High school or less Vocational/trade/some college Bachelor’s degree Postgraduate Unknown Employment, %(n) Employed Unemployed Disability Unknown Annual household income $100 K Unknown
39 15 93 (83) 31 36 7 26 60
(28) (32) (6) (23) (53)
62 27 8 2 1
(55) (24) (7) (2) (1)
47 (42) 53 (47) 22 30 24 20 3
(20) (27) (21) (18) (3)
28 35 34 3
(25) (31) (30) (3)
60 8 11 9 11 1
(53) (7) (10) (8) (10) (1)
a
Includes Medicare (based on age, n ¼ 1), Veterans Affairs (n ¼ 1), privately purchased (n ¼ 1). b Includes Medicare (based on dialysis/disability, n ¼ 2), uninsured (n ¼ 3).
positive (96%) and had inflammatory arthritis (94%) (Table 2). The mean and median structural social capital score was 17, range 1 to 38, and the interquartile range was 9 to 23 (Table 2). The mean and median cognitive social capital score was 17, range 0 to 54, interquartile range 11 to 21. The mean and median overall social capital score was 34, range 3 to 71, and the interquartile range was 22 to 44. The correlation between the structural and cognitive social capital domains was r ¼ 0.57 (p < 0.0001). With respect to individual sections of the social capital scale, 53% of patients (n ¼ 47) reported being a member of a group or organization and 51% (n ¼ 45) considered themselves to be active participants in the group. Types of groups included
Social capital: a novel platform for understanding social determinants of health in SLE SS Kim et al.
125
Table 2 Clinical and psychosocial characteristics Systemic lupus erythematosus characteristics Duration of disease (years) mean SD median Age at diagnosis (years) mean SD median Number of ACRa criteria fulfilled (mean SD) Malar rash, % (n) Discoid rash, % (n) Photosensitivity, % (n) Ulcers, % (n) Arthritis, % (n) Serositis, % (n) Renal disorder, % (n) Neurologic disorder, % (n) Hematologic disorder, % (n) Immunologic disorder, % (n) Antinuclear antibodies, % (n) SELENA-SLEDAIb score mean SD median SLICCc/ACRa Damage Index mean SD median Psychosocial measures Social Capital Score (A-SCATd) scores (mean SD) Structural domain Cognitive domain Overall CES-De score (mean SD) MOSf-Social Support Survey scores (mean SD) Informational subscale Tangible subscale Affectionate subscale Positive social interaction subscale Overall Self-efficacy scoreg (mean SD)
Values
12 8 11 27 14 25 61 56 (50) 10 (9) 24 (21) 28 (25) 94 (84) 45 (40) 38 (34) 16 (14) 40 (36) 76 (68) 96 (85) 43 4 12 1 34 15 17 9 17 8 34 15 22 13 66 27 64 28 63 34 72 31 67 31 66 27 52
a
American College of Rheumatology. Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA)-SLE Disease Activity Index (SLEDAI). c Systemic Lupus International Collaborating Clinics (SLICC). d A-SCAT: Adapted Social Capital Assessment Tool. e Center for Epidemiologic Studies Depression Scale (CES-D). f Medical Outcomes Study (MOS). g Self-Efficacy for Managing Chronic Disease 6-Item Scale. b
religious 21% (n ¼ 19), work-related 18% (n ¼ 16), education-related 15% (n ¼ 13), health-related 15% (n ¼ 13), and neighborhood associations 11% (n ¼ 10). Regarding a sense of community responsibility in terms of joining together for common issues, 72% (n ¼ 64) felt that collective action was a realistic and feasible option; 36% (n ¼ 32) indicated they had participated in collective action to address common neighborhood issues; and 80% (n ¼ 71) indicated they participated in citizenship activities such as voting, participating in social or
political demonstrations, and talking with authorities about local issues. Overall, 48% (n ¼ 43) responded having ‘‘someone in the neighborhood’’ that they could rely on, either for emotional 54% (n ¼ 48), instrumental 22% (n ¼ 20), and informational 44% (n ¼ 39) support; however, only 38% (n ¼ 34) reported they felt part of their neighborhood. The mean and median CES-D scores were 22 and 19, respectively, range 2 to 48, the interquartile range was 11 to 31, and 63% (n ¼ 56) had a positive screen for depression (Table 2). The mean MOS Social Support Survey scores for each of the subscales were 64 for informational, 63 for tangible, 72 for affectionate, and 67 for the positive social interaction. The mean and median overall MOS Social Support Survey scores were 66 and 72, respectively, range 0–100. The mean and median Self-Efficacy Scale score was 5, range 2 to 8, and the interquartile range was 4 to 7. Social capital and psychosocial scores were compared according to demographic, socioeconomic, and SLE-related clinical features (Table 3). Patients were more likely to have higher overall social capital scores if they were older, female, Caucasian, had more education, and had nonMedicaid insurance. Hispanic ethnicity, marital status, and employment status were not associated with social capital. Lupus disease activity, damage, and duration also were not associated with social capital. In sub-analyses according to social capital domain, the associations with age, sex, race, insurance and educational attainment were mainly driven by the structural social capital scores (Table 3). With respect to depressive symptoms, there were no differences in CES-D scores according to demographic and clinical subgroups (data not shown). With respect to self-efficacy, patients who were younger, currently employed, privately insured, and had lower SLE disease activity (as defined by SELENA-SLEDAI High school (66) 36 14b Employment status, (n) Unemployed (64) 32 16 Employed (25) 38 12 SELENA-SLEDAId (n)
