Social support can provide empathy, tangible aid, advice, and encouragement and is associated with improvements in quality of life for patients with inflammatory bowel disease (IBD) (1). Social network diversity, the types of social relationships in which a person is actively embedded, is 1 way to describe a person's social connections and the means by which they can gain access to social support. We aimed to examine social network diversity as reported by patients with IBD and to examine the association between social network, daily IBD burden, and related cognitive factors such as loneliness and psychological well-being (2).
METHODSPatients with IBD from a single center were recruited to complete a survey of validated instruments. The Social Network Index assesses one's participation in 12 types of social relationships (3). These include relationships with a spouse, parents, parents-in-law, children, other close family members, close neighbors, friends, workmates, schoolmates, fellow volunteers, nonreligious and religious group members. Social network diversity ranges from 1 to 12 types of social relationships in which a person is actively embedded (Supplementary Digital Content, see Table S1, https://links.lww.com/CTG/A915). The University of California, Los Angeles Loneliness Index assesses loneliness by “How often do you feel left out?” “How often do you feel isolation?” and “How often do you feel that you lack companionship?” (4). The Psychological Well-being Scale corresponds to autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance (5).
The primary outcome was daily IBD burden using a measure from the ulcerative colitis-patient reported outcome and Crohn's disease-patient reported outcome corresponding to how much a respondent's IBD affected their life in the past 7 days (6). We compared linear regressions that examined the relationship between social network diversity and daily IBD burden to determine which model fits the data best. In model 1, we adjusted a priori for age, sex, corticosteroid use, anxiety or depression, IBD type, and disease severity (defined by current corticosteroid use or immune-targeted therapy). However, heterogeneity in the need for social support is well described. People who are lonely or have low psychological well-being may benefit most from social network diversity. Therefore, we examined the moderating effects of psychological well-being (model 2) and loneliness (model 3) using interaction terms. The model with the smallest Akaike information criterion and Bayesian information criterion was considered the best fit.
RESULTSParticipants were drawn from a sample of 701 patients with IBD followed at a single center. One hundred sixty-three patients with IBD completed the survey between April 2021 and 2022 (n = 152, 93.3% electronically, n = 11, 6.7% by phone) (Table 1). Respondents were of similar age (mean 41.2, SD 16.7 years) and sex (54.2% female) to our single-center population with similar diagnoses (47.8% Crohn’s disease), comorbid mental health disorders (33.8%), and biologic use (45.7%). A higher daily IBD burden was reported by participants with Crohn’s disease (mean 10.40, SD 9.64) or indeterminate colitis (mean 15.00, SD 10.58) over ulcerative colitis (mean 5.19, SD 7.02) (P = 0.032), anxiety (mean 12.80, SD 10.19, P < 0.001), or depression (mean 12.80, SD 10.19, P < 0.001) and those receiving corticosteroids (mean 12.59, SD 9.39, P = 0.023) (Table 2). Participants reported active participation in a mean of 5.61 (SD 1.72) types of social relationships. Most often these relationships were with friends (n = 135, 82.8%), relatives (n = 114, 69.9%), children (n = 103, 63.2%), or parents (n = 103, 63.2%).
Table 1. - Patient characteristics associated with social network connections Patient characteristics Overall Social network diversity (mean, SD) P value Total (n) 163 5.61 (1.72) Demographics Age 0.190 40 yr or older 116 (71.6%) 5.72 (1.74) Younger than 40 yr 46 (28.4%) 5.32 (1.67) Sex 0.550 Male 71 (43.6%) 5.52 (1.65) Female 92 (56.4%) 5.69 (1.78) Education 0.141 High school diploma 11 (6.9%) 4.73 (1.10) Some college 33 (20.8%) 5.85 (1.52) Associate degree 17 (10.7%) 5.77 (1.44) Bachelor degree 49 (30.8%) 5.55 (1.99) Graduate degree 49 (30.8%) 5.78 (1.70) Missing 4 (0.0%) 4.25 (2.06) Location of residence 0.756 Urban 26 (16.4%) 5.27 (1.85) Suburban 100 (62.9%) 5.66 (1.76) Rural 33 (20.8%) 5.70 (1.61) Missing 4 (0.0%) 6.0 (0.82) Race 0.752 White 140 (85.9%) 5.73 (1.72) Black 12 (7.4%) 5.50 (1.45) Other 11 (6.8%) 4.27 (1.62) Comorbid diagnoses Depression 54 (33.1%) 5.00 (1.47) 0.001 No depression 109 (66.9%) 5.92 (1.77) Anxiety 54 (33.1%) 5.00 (1.47) 0.001 No anxiety 109 (66.9%) 5.92 (1.77) IBD-related details IBD type 0.149 Ulcerative colitis 75 (46.3%) 5.55 (1.56) Crohn's disease 73 (45.1%) 5.53 (1.83) Indeterminate colitis 5 (3.1%) 5.60 (0.89) Unknown 10 (5.6%) 6.56 (2.24) Crohn's disease phenotype Fistulizing 26 (35.6%) 5.96 (2.07) 0.262 Nonfistulizing 137 (64.4%) 5.55 (1.65) Stricturing 33 (45.2%) 5.61 (1.50) 0.978 Nonstricturing 130 (54.8%) 5.61 (1.78) Disease extent Colonic involvement 108 (66.3%) 5.61 (1.72) 0.980 No colonic involvement 55 (33.7%) 5.62 (1.75) Small bowel involvement 67 (41.1%) 5.43 (1.67) 0.265 No small bowel involvement 96 (58.9%) 5.74 (1.75) Upper gastrointestinal involvement 24 (14.7%) 5.92 (1.72) 0.352 No upper gastrointestinal involvement 139 (85.3%) 5.56 (1.72) Current medications Systemic corticosteroids 17 (10.4%) 5.18 (1.47) 0.270 5-aminosalicylate 40 (24.5%) 5.43 (1.71) 0.427 Immune-targeted therapy 87 (53.4%) 5.39 (1.60) 0.077 Immunomodulator 43 (26.4%) 5.28 (1.49) 0.138 Biologic 70 (42.9%) 5.43 (1.65) 0.236 History of immune-targeted therapy Immunomodulator 88 (54.0%) 5.51 (1.67) 0.414 Biologic 84 (51.5%) 5.43 (1.73) 0.158IBD, inflammatory bowel disease.
IBD, inflammatory bowel disease.
Model 3 was the best fit (Table 3; Supplementary Digital Content, see Table S2, https://links.lww.com/CTG/A916). Patients with higher social network diversity reported a lower daily IBD burden (beta −1.72, 95% confidence interval −3.24 to −0.20, P = 0.027) after adjusting for age, sex, corticosteroid use, anxiety or depression, IBD type, and disease severity. We found a positive interaction between loneliness and social network diversity on daily IBD burden. Respondents with a higher degree of loneliness were more likely to have a strong relationship between social network diversity and daily IBD burden than those with a low degree of loneliness (beta 0.36, 95% confidence interval 0.18, 0.71; P = 0.039).
Table 3. - Social network diversity and IBD daily life impact Daily life impact of IBD Beta 95% confidence interval P value Social network diversity −1.72 −3.24 to −0.20 0.027 Anxiety or depression 1.16 −1.88 to 4.21 0.451 Loneliness 0.40 −1.49 to 2.30 0.675 Social network diversity lonelinessa 0.36 0.02 to 0.70 0.040 Current systemic steroids 4.45 0.32 to 8.59 0.035 Age 40 yr or older −1.42 −3.92 to 1.08 0.263 Female sex −0.94 −3.52 to 1.63 0.472 Current immune-targeted therapies −1.41 −4.32 to 1.50 0.339 IBD type Ulcerative colitis Ref Ref Ref Crohn's disease 2.73 0.09 to 5.38 0.043 Indeterminate colitis 1.23 −6.94 to 9.39 0.767 Unknown 2.02 −3.95 to 7.98 0.506 Race White Ref Ref Ref Black −0.83 −6.22 to 4.56 0.761 Other −3.85 −8.72 to 1.02 0.120Bold signifies statistical significance.
aModel fit: Akaike information criterion, AIC 1113.72; Bayesian information criterion, BIC 1156.86.
IBD, inflammatory bowel disease.
Social network diversity refers to the types of social relationships in which a person is actively embedded. Patients with IBD with higher social network diversity reported a lower daily IBD burden. There are several possible reasons for why social network diversity is beneficial to IBD health (1). Certain social connections may address patients' specific needs (7). A person's parents might provide tangible aid, such as a ride to an infusion, while one's friend might better encourage symptom monitoring or advise on medication adherence. By contrast, relying on support from a single close contact may have its functional limitations or lead to caregiver burn out. A higher level of social network diversity may also indicate social integration, which could strengthen psychological well-being and reduce feelings of loneliness. The relationship between social network diversity and daily life impact of IBD differed across people with varying degrees of loneliness, but not varying degrees of psychological well-being; people with higher levels of loneliness experienced less of a beneficial effect of social network diversity on IBD daily life impact. This suggests that lonely patients may benefit most from interventions that target social network diversity.
The study strengths include the use of validated instruments to collect information on social and cognitive constructs, and patient-reported outcomes. However, study limitations include a cross-sectional design that does not allow for causal inference, selection bias, and potential unmeasured confounders. Furthermore, the relationship between depression, anxiety, social networks, and IBD health is likely complex and bidirectional and will need to be studied further.
Study findings suggest there is relevance to considering diverse social connections as an indicator of risk for higher IBD burden. This may help us identify patients at highest need for interventions that aim to expand social network diversity. Several successful self-management interventions that leverage the support of one's social network have been developed for patients with diabetes and depression. For example, a patient-supporter intervention that incorporated participation of a family member or friend in coaching sessions increased their involvement in the self-management for patients with diabetes (8). Similarly, a heart failure intervention targeting care partners in automated calls led to more active care partner engagement in supporting patients' self-care (9). We can adapt these interventions to develop interventions to support IBD patients with varying social network diversity.
CONFLICTS OF INTERESTGuarantors of the article: Shirley Cohen-Mekelburg, MD, MS.
Specific author contributions: J.P., K.R., S.C.-M., P.H., A.W.: conceptualization. L.V., J.S., A.J., S.C.-M.: data curation. S.C.-M.: formal analysis. All authors: investigation; methodology. L.V., P.H., S.C.-M.: supervision. L.V., S.C.M.: writing (original draft). All authors: critical revision of the manuscript; final approval.
Financial support: Jessica Sheehan is supported through T32 DK062708.
Potential competing interests: This research was supported by Clinical and Translational Science Award UL1TR002240 through the Michigan Institute for Clinical and Health Research from the National Institutes of Health. S.C.-M. was supported by KL2TR002241 through the Michigan Institute for Clinical and Health Research from the National Institutes of Health. P.D.R.H. was supported by R01 DK125687, R01 DK118154, R01 DK109032, and T32 DK062708 through the National Institutes of Health. J.P. is a Research Career Scientist from the US Department of Veterans Affairs.
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