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Invited Commentary
December 11, 2020

A Case to Optimize Medications in Children With Severe Neurological Impairment

Author Affiliations
  • 1Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
  • 2Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio
JAMA Netw Open. 2020;3(12):e2029728. doi:10.1001/jamanetworkopen.2020.29728

As the prevalence of pediatric chronic conditions has increased, rates of pediatric polypharmacy have also increased.1 Generally defined as 5 or more daily scheduled medications, pediatric polypharmacy increases the risk of drug-drug interactions, adverse drug reactions, and readmissions.2-4 Children with severe neurological impairment (SNI) have increased prevalence of chronic health conditions extending beyond the neurological system. As a result, these children are often prescribed multiple medications to treat a multitude of symptoms, including irritability, pain, insomnia, and constipation, among others. Clinicians and families are faced with the conflict of using pharmacological therapy to adequately treat symptoms without provocation of potential adverse medication symptoms. However, there is no standardized method of assessing symptom burden and limited evidence to guide symptom management in this population.5 There is a need to more clearly understand the association of medications with symptoms to optimize prescribing decisions.

Feinstein et al6 have embarked on an important step to do just that. The study team evaluated symptom burden in a cohort of children with SNI using a structured, parent-reported symptom inventory, the Memorial Symptom Assessment Scale, which measured the frequency, severity, and extent of 28 different symptoms in the previous 7 days as reported by parents. On the basis of this information, a surrogate marker of overall symptom burden, the global symptom score, was calculated. Patients with higher global symptom scores had a higher symptom burden. Through extraction of clinical and medication data, the study team assessed the association of symptom burden with polypharmacy, as well as the associations of specific symptoms with alleviating or aggravating prescribed medications.

Several findings of this study6 are notable. First, participants had high symptom burden even when well. Remarkably, children with SNI in this study had symptom burdens that significantly exceeded those reported in children with terminal cancer at the end of life. Irritability, insomnia, and pain were reported most often. Of note, only 61% of those with pain were prescribed a scheduled analgesic, suggesting the potential for optimization of medications driven by reported symptom burden. However, higher symptom burden was associated with a greater number of regularly scheduled medications, perhaps signaling that the addition of more medications does not always translate to better symptom control. Underscoring this, 75% of those with constipation were taking 1 or more scheduled medications to treat constipation. Perhaps interrogating the remainder of patients’ medication lists may reveal medications at the root of such troublesome symptoms that may be deprescribed. Highlighting the importance of assessing the medication list to elucidate medications known to provoke symptoms, Feinstein et al6 found an association between the use of anticholinergic medications and parent-reported constipation and drowsiness, which are known adverse effects of these medications. A system that cross-references reported symptoms with medications known to cause or exacerbate symptoms would be beneficial as clinicians and families seek to optimize medication management and symptom burden.

This study6 should be interpreted in the context of some important limitations. It was conducted at a single center and most of children were White with White, English-speaking caregivers. This is relevant especially to interpretation of findings with regard to symptoms of pain. Non-White patients are significantly more likely to be assessed and undertreated for pain.7 Given that the results of this study indicate pain as an extremely prevalent symptom and one that may be undertreated, one could hypothesize that pain and other symptoms are experienced and undertreated even more often by non-White children with SNI. It should also be noted that pain as a symptom is nuanced, complicated, multifactorial, and difficult to interpret in this largely nonverbal population. Additionally, pain management often requires a multimodal approach. As-needed medications, in addition to other nonpharmacological therapies that are integral to treatment of pain, were excluded from this study.6 To comprehensively understand pain management in children with SNI, future work should include a diverse population that may experience or report pain differently, evaluation of the multifactorial nature of pain as a symptom, and a more thorough assessment of management (including as-needed medications and integrative therapies).

Despite these limitations, this study by Feinstein et al6 enumerates the prevalence and burden of symptoms and gives insight into the delicate relationships that exist between symptoms and medications in children with SNI. The extremely high symptom burdens reported by parents of children with SNI highlights a critical need to better assess and treat symptoms. Although there is a paucity of evidence to guide the management of many frequently experienced symptoms (eg, irritability, insomnia, and pain), knowledge of the presence and severity of these symptoms and how they are associated with different medications is a crucial first step to improving symptom management in this population. Because the degree of symptom burden was associated with increasing polypharmacy, families and clinicians need to continually and carefully reassess symptoms, therapies, and perceived benefits. Recognizing that the addition of medications may not always result in better outcomes and may actually result in undesired adverse effects, families and clinicians also need to thoughtfully assess for such effects in a structured way to delineate opportunities for deprescribing. The optimization of medications in this population, both through the thoughtful addition of therapies whose benefits outweigh potential adverse effects and deprescribing of medications whose detriments may outweigh their usefulness, has potential to improve symptom burden and quality of life.

Through this study, Feinstein et al6 have elucidated a strong need to optimize prescribing and monitoring decisions through more clearly understanding the impact of medications on symptom management. Their novel use of a structured, parent-reported symptom inventory shows promise in helping clinicians identify symptoms that require treatment in a population of children who are unable to self-report symptoms. Further work should use structured, parent-reported symptom inventories to guide treatment of symptoms in children with SNI and study the impact of this approach on outcomes for this population.

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Article Information

Published: December 11, 2020. doi:10.1001/jamanetworkopen.2020.29728

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Musial A et al. JAMA Network Open.

Corresponding Author: Abigail Musial, MD, Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, ML 9016, Cincinnati, OH, 45229 (abigail.musial@cchmc.org).

Conflict of Interest Disclosures: None reported.

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