LAS VEGAS — Social and community support may be tied to fewer health system barriers and improved health outcomes at diagnosis in pediatric patients with inflammatory bowel disease (IBD), researchers said here.
Based on 10-point Likert scale responses from IBD caregivers, the top barriers were psychosocial (5.1), finances (3.2), treatment (2.1), and communication (3.0). For IBD patients, school (3.4) and psychosocial (3.1) were the top barriers, reported Jennifer Dotson, MD, MPH, of Nationwide Children’s Hospital in Columbus, Ohio at the Crohn’s & Colitis Congress.
On a multidimensional measure of community support (Perceived Community Support Questionnaire [PCSQ] subscore percent endorsement), respondents mildly or strongly agreed with the following:
- Identification with community: 44% patients, 65% of primary caregivers, 54% of secondary caregivers (also typically family members)
- Participation in community: 36%, 57%, 43%, respectively
- Support from organizations: 58%, 77%, 71%, respectively
“Greater community support was associated with fewer psychosocial barriers for both parents and patients,” the researchers wrote. “More social support was associated with fewer psychosocial barriers for patients only.”
There are gaps in the existing literature concerning health system barriers for pediatric IBD patients and their families, as well as a lack of possible targets for solutions. Prior research has shown that families consider the psychosocial aspects of care at diagnosis as their primary barrier, Dotson noted.
The investigators evaluated survey responses from 79 pediatric patients (47% female; 82% white; mean age 13.4), 84 primary caregivers (72% married; 63% employed full-time), and 28 secondary caregivers. Inclusion criteria included being able to speak English, and being within 3 months of diagnosis. Patients were evaluated at diagnosis, at 6 months and at 12 months; interviews and telephone calls were done intermittently as well.
Patients (at least 11 years old) and their caregivers filled out a separate set of electronic surveys concerning community support, social support, and health system barriers.
Community support data was gathered using the PCSQ, and social support data was gathered using the Multidimensional Scale of Perceived Social Support (MSPSS). Disease severity was evaluated using the Physician Global Assessment (PGA). Patients quality of life was evaluated using the parent proxy PedsQL and age-appropriate PedsQL. Pearsons correlations were used to assess the relationships between PGA, PCSQ, MSPSS, and barriers.
Most survey respondents had Crohn’s disease (72%) and were within 40 days of their diagnosis. They had satisfactory nutrition status (57%), growth (76%), and mild disease severity (61% for mild PGA).
For the average summary score item, the MSPSS percent endorsement was 5.1% for patient, 5.6% for primary caregiver, and 5.4% for secondary caregiver. Primary caregivers more strongly endorsed the statement “I can count on my friends when things go wrong,” while patients more strongly endorsed the statement “My family really tries to help me,” the authors reported.
Study limitations included the fact that it was single center, so the results may not be generalizable. Also, the surveys were subject to recall and recruitment biases, Dotson stated.
Prior investigations have found links between community and social support and better outcomes in children with chronic conditions. Moreover, adults with active IBD often felt isolated, but women with IBD with social support had milder forms of the disease. Community support can contribute to improved mental and physical health, Dotson stated.
Dotson declared she had no relevant relationships with industry.