P3.P313: Student-Led Initiative to Bridge the Gap Between Resource Awareness and Utilization for Pediatric Patients with Spina Bifida

Background: Individuals with disabilities are an underserved population within our community who experience higher rates of unemployment, poverty, and chronic diseases. These disparities also extend to pediatric populations, such as those with spina bifida who are at greater risk of living with obesity, among other comorbidities. One factor behind this increased rate of obesity is physical activity limitations, a challenge experienced by those unable to ambulate due to spina bifida. From mobility barriers to participating in school activities with classmates, to navigating the emotional journey of finding independence with a chronic disease, this is an especially vulnerable population. To advocate for pediatric patients with spina bifida, Project Support, Empower, and Engage with the Disability Community (Project S.E.E.D) was developed by medical students with support from the Albert Schweitzer Fellowship.

Project Description: Project S.E.E.D aims to bridge the gap between resource awareness and utilization to improve health and social quality of life (QOL). Based in the UTHealth Spina Bifida Clinic, a multidisciplinary clinic with general pediatricians, pediatric sub-specialists (urologists, neurosurgeons, orthopedic surgeons, PM&R physicians), and physical therapists, patients and their families are provided a resource checklist during their first encounter. The checklist includes a list of financial, social support, adaptive athletic, and educational resources they can be connected with, after which 1-month follow-ups are completed to ensure families are able to access and utilize each resource.

Discussion: To understand the role this initiative has in improving awareness of non-medical resources and fostering support for patients, surveys were completed by families before and after each encounter. Responses were elicited for several domains, including resource knowledge, current quantification of resource use, and confidence in navigating resources. Parents’ perceptions of their child’s overall health and quality of life were also analyzed, with questions created using PROMIS metrics. Responses were collected using a Likert scale and analyzed with STATA. Mean survey scores for categories related to resource knowledge, utilization, and QOL were not significantly different between pre-survey (n=65) and post-survey (n=16) responses. Notably, health-related QOL (4.04) had significantly higher scores than other categories ( < 2.63) in the pre-survey.

Conclusion: Though this study did not reveal significant findings between timepoints, the high baseline health-related QOL may be suggestive of the importance of multidisciplinary clinics existing for children with chronic illness. Limitations of this study include the small sample size, low number of post-survey responses, lack of standardization of resource questions, and the absence of data on whether or not the encounter during which the survey was administered was the patient’s first multidisciplinary clinic visit. Further longitudinal investigation of these findings in a larger cohort would be useful given the limitations of this study.