Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic

To characterize child, parent, and family adjustment for patients followed in a multidisciplinary spina bifida (SB) clinic.

Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2017 and 2019. Participants included 209 youth under 19 years old who were diagnosed with SB and their parents. Self-reported internalizing symptoms were measured in youth in grade 3 through 12 using the 25-item Revised Children's Anxiety and Depression Scale-25 (RCADS-25). Self- and parent-reported quality of life and family functioning were obtained using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Family Impact Modules.

A total of 45.7% of children and adolescents reported at-risk psychosocial functioning on the PedsQL. In contrast, only 5% of patients reported clinically elevated internalizing symptoms on the RCADS. Parents' quality of life and family functioning in the study were higher than in most studies of parents of children with other chronic health conditions, children with attention deficit-hyperactivity disorder, and healthy control samples.

Our findings indicate that children and adolescents with SB are at risk for poor health-related quality of life (HRQOL); however, poorer HRQOL may not necessarily be associated with more severe psychiatric symptoms in this population. Examining resilience factors that may help to buffer against challenges to HRQOL will be important in informing future interventions.