Current research, survey results support neurologists’ role in diagnosing cerebral palsy

Child neurologists and neurodevelopmentalists do not make the diagnosis of cerebral palsy for most children with the condition, according to results of a survey of these providers that was published in Neurology.

While current consensus guidelines do not address or recommend referrals to a specific specialist for a cerebral palsy (CP) diagnosis, the researchers recommended early referral to child neurologists and neurodevelopmentalists (CN/NDD) for this, given the “increasing complexity” of the condition.

“The skills necessary to make a CP diagnosis have become increasingly broad,” the researchers wrote. “There is growing recognition of genetic etiologies for a CP phenotype, which have implications for family counselling, screening of co-morbidities, anticipatory guidance and long-term prognosis. There has also been an increased recognition of atypical or progressive disorders that can be confused for CP particularly early in life (so-called CP “mimics”), many of which require early recognition and initiation of treatment to prevent long term sequelae.”

Bhooma R. Aravamuthan, MD, DPhil, assistant professor in the division of pediatric neurology at Washington University School of Medicine, and colleagues aimed to contextualize the role of CN/NDD in CP care. To do so, they reviewed how the diagnosis of CP has changed over time and conducted a survey of stakeholder CN/NDD from the Child Neurology Society’s CP special interest group.

The researchers surveyed 44 CN/NDDs from the special interest group and received 41 responses, for a participation rate of 93%. The special interest group included primarily physicians from academic centers (84%) who saw patients in the inpatient and outpatient settings (67%) and who had been in practice for at least 1 year (63%); 24% respondents had been in practice for more than 10 years. Most providers (81%) had a dedicated CP clinic or CP center at their institution (81%).

CN/NDDs reported feeling like they were “optimally suited” to diagnose CP, according to Aravamuthan and colleagues. Many (76%) said that CN/NDDs should “always” be involved in the diagnosis of CP. However, nearly half of respondents (42%) said that their patients with CP were not usually diagnosed by a CN/NDD; 18% also reported that they did not receive referrals to determine the diagnosis of CP at all.

Respondents also referenced areas of their expertise seen as “critical” for a CP diagnosis. These areas included knowledge of the neurological exam across development and early identification of features not typical for CP. These findings stood in contrast with views on the management of patients with CP, according to the researchers; in this domain, CN/NDDs believed they could contribute to the medical team and were necessary primarily in instances where the patient had coexisting neurological conditions.

The purpose of a diagnostic evaluation for CP “is to both characterize the CP phenotype and determine the CP etiology,” according to Aravamuthan and colleagues, and these are skills in which CN/NDDs may be “particularly adept.” The researchers also suggested that CN/NDDs are well equipped to serve as CP diagnosticians, based on the evidence regarding early CP diagnosis, CP etiologies and “mimics” and the issues surrounding CP motor phenotyping.

“The training focus of CN/NDDs largely supports a role in each of these areas,” the researchers wrote. “These recommendations are additionally supported by the views of a community of [CN/NDDs] who have specific interest in caring for children with CP as evidenced by their involvement with the [Child Neurology Society’s CP special interest group].”

Aravamuthan and colleagues acknowledged that their recommendations were based on a small group of CN/NDDs with a specific interest in CP. They also noted that the respondents tended to be younger, but said that is “ultimately encouraging” regarding the future for CN/NDDs in the management of CP.

“It will be essential to obtain agreement from the CN/NDD community at large regarding their role as CP diagnosticians,” the researchers wrote. “Surveying a larger group of [CN/NDDs] regarding this role can be the first step toward gauging this.”