Establishing a Comprehensive Online Patient Recommendation-Based Pediatric Spina Bifida Resource Repository
Dylan J. Cahill, BA, Rebecca Sherlock, PNP, Carlos Estrada, Jr., MD, MBA.
Boston Children's Hospital, Boston, MA, USA.
Pediatric patients with spina bifida (SB) are a vulnerable population that lacks access to many activities and resources commonly available to healthy children and adolescents. Caregivers overwhelmed with managing patients' immediate clinical needs often feel unsupported in seeking out special activities or services. Poorly consolidated online resources, limited to Facebook groups and individual webpages, necessitates the development of an updated, accessible, comprehensive pediatric SB patient resource repository.
We prospectively interviewed a selection of SB patients and families in our SB clinic. Participants selected were those known by the clinic staff to be active and connected within the SB community. Recommendations were sought in the following categories: daycares, camps, sporting activities, rehabilitation services, clothing and shoe brands, transportation, jobs and career development, and travel opportunities. Patients were encouraged to share any unmet needs at the conclusion of each interview. Each patient recommendation was further researched before being added to our online database with a brief description, link, contact information, and dates where appropriate.
15 patients and families recommended more than 50 resources, each of which has been independently researched, categorized, and compiled into a centralized online resource repository (Figure 1). Most (74%) recommendations collected fall under the categories of summer camps, adaptive activities, and clothing and shoe brands. The most prevalent unmet need, shared by 4/15 patients, is affordable and accessible transportation options, particularly motorized wheelchairs with off-roading and/or long-range capabilities and wheelchair-accessible vehicles for older patients who hope to learn to drive and obtain employment outside of the home. The project has been met with universal enthusiasm by caregivers, several of whom offered contact information in order to serve as direct resources for other families of children with disabilities.
We provide a framework for the establishment of a patient/family recommendation-based resource repository for pediatric SB patients and other patient populations with disabilities. We continue to conduct interviews and expand the repository and hope to collaborate with other institutions to approach their patients who can contribute to this novel resource.
Figure 1. Representative Image of Summer Camp List in Online Resource Repository
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