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Research Letter
October 12, 2020

Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms

Author Affiliations
  • 1Adult and Child Consortium for Health Outcomes Research & Delivery Science (ACCORDS), University of Colorado, Children’s Hospital Colorado, Aurora
  • 2Division of General Pediatrics, Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 3Skaggs School of Pharmacy & Pharmaceutical Sciences, University of Colorado, Aurora
  • 4Research Institute, Children’s Hospital Colorado, Aurora
  • 5Research Informatics, Analytics Resource Center, Children’s Hospital Colorado, Aurora
JAMA Pediatr. Published online October 12, 2020. doi:10.1001/jamapediatrics.2020.2987

Children with severe neurological impairment (SNI) and limited communication abilities often receive numerous medications to treat their medical conditions and ameliorate symptoms.1 To our knowledge, no system currently exists to assess multiple symptoms in this vulnerable population of children who cannot self-report; consequently, the clinical identification and subsequent management of adverse symptoms may be impeded.2 Patient-reported outcomes using the Memorial Symptom Assessment Scale (MSAS) have helped guide symptom management in children with terminal cancers.3 We created the Parent-Reported Outcomes of Symptoms (PRO-Sx) system to collect structured clinical, medication, and symptom data using the MSAS for symptom assessment.4 We used PRO-Sx in a population of children with SNI to test the hypothesis that previsit PRO-Sx data would identify more symptoms than clinicians do at the time of visit and to assess concordance between PRO-Sx and clinician-collected symptom data.

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