Preventive Care for Adults With Cerebral Palsy and Other Neurodevelopmental Disabilities: Are We Missing the Point?

Abstract

Preventive care techniques are cornerstones of primary care for people with neurodevelopmental disabilities such as cerebral palsy (CP). However, well-established methods evaluating health constructs may not be applied in the same way for adults with CP, as compared to the general population, due to differences in anatomy/physiology, leading to missed opportunities for interventions, medication modifications, and other primary/secondary prevention goals. One barrier to care prevention comes from misinterpretation of values to capture health constructs, even when measurements are accurate. In this Perspective, we emphasize the need for differential interpretation of values from commonly used clinical measures that assess for well-known medical issues among adults with CP obesity risk, bone health, and kidney health. We provide technical, but simple, evidence to showcase why the underlying assumptions of how some measures relate to the health construct being assessed may not be appropriate for adults with CP, which may apply to other neurodevelopmental conditions across the lifespan.

Keywords: aging; cerebral palsy; neurodevelopmental disabilities; preventive care; primary care; secondary care.

Figure 1

Illustration to highlight how various body fat measures can lead to different interpretations of obesity risk for adults with mild and severe cerebral palsy (CP). The rectangles represent different body dimensions (note the height and width difference) and non-sex-specific fat and fat-free mass distribution. The body composition measures in the table below the rectangles represent non-sex-specific data informed by published studies on adults with and without CP. Bold text represents when a body fat measure may present as low in CP. Underlined text represents when a body fat measure may present as similar in CP. Italicized test represents when a body fat measure may present as high in CP. Depending on the body measure analyzed, interpretations may include that adults with CP have higher, similar, or lower obesity risk.

Figure 2

Bone mineral density (BMD), a ratio of bone mineral content (BMC)/bone area, via dual-energy x-ray absorptiometry (DXA) is often used to assess for fracture risk. However, BMD alone can be misleading as it does not provide information on size, which is a major determinant of fracture risk. The “donut” shape represents a cross-sectional diaphysis, with the gray being cortical bone and the open circle being the bone marrow. The white in the cubes represents trabecular bone microarchitecture. (A) BMD alone may miss the size-related attributable fracture risk regardless of BMC-area covariation (left panel in A), but especially after considering that narrow and wide bones have proportionally greater and lesser mineralization, respectively (right panel in A). (B) DXA-derived BMD has limited value in situations where BMD may not be reflective of other structural traits in defining fracture risk at the same or other skeletal sites. (C) The clinical consequence is under-detection or a false positive diagnosis for bone fragility. In summary, DXA-derived bone traits provide important information to assess fracture risk, but more structural information and at different sites may be needed to better detect and monitor fracture risk for adults with cerebral palsy.