An Ethical Framework for Deep Brain Stimulation in Children

Benjamin Davidson, MD; Lior M. Elkaim; Nir Lipsman, MD, PhD; George M. Ibrahim, MD, PhD


Neurosurg Focus. 2018;45(3):e11 

In This Article

The Evidence: Translating From Adult to Pediatric Populations

Although children are biologically different from adults, the evidence used to guide pediatric DBS is largely derived from adult data. Stimulation parameters for dystonia DBS were adopted from the adult Parkinson's disease experience, with most patients receiving > 100 Hz of stimulation.[3] In a relatively large case series, Alterman et al. demonstrated that dystonia may respond well to much lower-frequency stimulation, i.e., 60 Hz.[3] Stimulation frequencies and voltages have been demonstrated to be safe in adults, causing only mild gliosis, but such reports are not available in children.[29] Despite a few prior successful treatments, clinicians should be aware and communicate to families that there is simply not a strong body of evidence regarding the use of these devices in children, yet.

Because the evidence for pediatric DBS remains in its infancy, the neurosurgeon is often acting as a clinician and scientist concurrently. "Therapeutic misconception" occurs when study participants fail to recognize the potentially competing roles and obligations of the treating physician as both clinician and scientist.[32] Patient populations that hold particularly negative views about their health are at higher risk for therapeutic misconception.[17]

Various strategies can be implemented to circumvent knowledge gaps and mitigate the risk of therapeutic misconception. The Fort Worth pediatrics program in Texas uses institutional board review to ensure that patients and families are adequately informed and fairly selected.[29] The program also uses an independent nurse to perform a parallel consent process. Regardless of the institution-specific process, each case should be carefully considered by a multidisciplinary group, factoring in whatever degree of input the child is capable of providing along with the decision of a competent substitute decision maker.