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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Feinstein JA, Feudtner C, Valuck RJ, et al. Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms. JAMA Pediatr. Published online October 12, 2020. doi:10.1001/jamapediatrics.2020.2987
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