Abstract

Background: Perceived stigmatization has been associated with poor disease outcomes in adolescents with chronic illnesses. Studies have shown that children diagnosed with inflammatory bowel diseases (IBD) are at greater risk for low self-esteem, poor social functioning and depression. Stressors associated with transitioning from pediatric to adult care could exacerbate these issues. While stigmatization has been studied in adult patients with IBD, little is known about the effects of perceived stigma on adolescent IBD patients or its effect on transitioning. Aims: To explore social determinants of IBD-related stigma, we (a) designed a cross-sectional quantitative questionnaire measuring perceived stigma, health status, quality of life, and transition readiness, and (b) analyzed domains of IBD-related stigma to predict transition readiness.Methods:We developed an adolescent-specific IBD questionnaire modeled on the Perceived Stigma Scale for IBS (PSS-IBS), which assessed three domains of stigma: disclosure, attitude, and feelings of rejection/shame. The questionnaire was administered to pts 15-23 yrs old with established IBD. Descriptive statistics were obtained on all study participants. Logistic regression analyses were used to compare subjects who had healthcare provider (HCP)-initiated interventions regarding care transition with those who had not, against IBD-related social stigma domains. Results: We enrolled 41 IBD pts (mean:17±2 yrs; 54%F, 46%M). Demographic data were as follows:Race/ethnicity (71% Caucasian, 22% African American, 7% Other);Education (63% in high school, 29% in college, 2% in middle school, 5% pursuing GED);Insurance status (71% private, 24% Medicaid/Healthchoice, 5% unsure).12% of pts reported excellent health status, 49% very good, 29% good, 7.5% fair, and 2.5% poor. Logistic regression analyses showed that pts who had not discussed transitioning with their HCP had greater attitude-related stigma regarding their IBD. Subjects who felt that their condition limited their social activities/hobbies were 2.9 times less likely to have discussed transition with the HCP (p ≤0.02). These pts also reported receiving inadequate disease self-management information. Only 45% of those who had not discussed transition, vs 87% of those who had, felt they had enough information to address their medical needs independently. Discussion: Our findings indicate the importance of the pediatric healthcare team in effectively addressing potential psychosocial barriers to health and developing more effective patient education strategies as a means of improving adolescent-adult care transitioning. More specific measures of barriers, such as socioeconomic status, could also be clinically useful in enhancing how we transition adolescent patients to adult care successfully, leading to improved medical outcomes and quality of life for these patients.

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