Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment

Abstract

Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use.

Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications.

Design, setting, and participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020.

Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data.

Main outcomes and measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated.

Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic.

Conclusions and relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.

Conflict of interest statement

Conflict of Interest Disclosures: Dr Feinstein reported receiving personal fees from New England Journal of Medicine Journal Watch Pediatrics & Adolescent Medicine for his role as an Associate Editor outside the submitted work and being an elected, voting member of the State of Colorado’s Medicaid Pharmacy & Therapeutics Committee. Dr Blackmer reported receiving personal fees from Wolters-Kluwer, the Pediatric and Neonatal Lexi-Drugs database, and the Colorado Department of Health Care Policy and Financing Drug Utilization Review Board outside the submitted work. Dr Fairclough reported receiving grants from the National Cancer Institute during the conduct of the study. No other disclosures were reported.

Figures

Figure 1.. Screening, Eligibility, and Study Inclusion Flowchart

aPatient was eligible to be reapproached. bIncludes medical team entered immediately, no research assistant available.

Figure 2.. Association Between Global Symptom Score (GSS) and Number of Daily Prescription Medications in 100 Children With Severe Neurological Impairment

This graph displays the association between GSS (independent variable) and number of daily prescription medications (dependent variable), adjusted for patient age and number of complex chronic conditions. The shaded area represents the 95% CI. On average, each 10-point increase in GSS was associated with a 12% (95% CI, 4%-19%) increase in total medication counts. The GSS is scored from 0 to 100, with 100 being the worst.

Figure 3.. Specific Symptoms Associated with Prescribed Medication Classes in 100 Children With Severe Neurological Impairment

The percentage displayed in each square corresponds to the percentage of children with a reported symptom (y-axis) who used a specific medication (x-axis, ordered by descending overall medication utilization). Because of no use, the following medications were not displayed in panel A: naproxen, morphine, methadone, and pregabalin. Similarly, the following medications were not displayed in panels C and D: bupropion, captopril, carbamazepine, dicyclomine, digoxin, doxepin, fentanyl, furosemide, morphine, nifedipine, olanzapine, theophylline, tiotropium bromide, and warfarin. aAlthough they are not analgesic medications, these antispasticity medications may be used to treat pain due to uncontrolled muscle tone.