Pediatric acquired demyelinating syndrome (ADS) in inpatient hospital settings: The hospitalization rate, costs, and outcomes in the US

Machiko Minegishi, T. Takahashi, Marcia Testa

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)


Background: Although relatively rare among pediatric patients, acquired demyelinating syndromes of the central nervous system (ADS) is a potentially disabling condition that warrants hospitalization and long-term follow-up. As such, a better understanding of the epidemiology and hospital utilization for this condition could provide critical information for health care planning and resource allocation. Objective: To evaluate the trends of hospital utilization and resource use associated with pediatric ADS in the US. Method: We conducted a serial cross-sectional trend analysis with complex sampling and weighting using nationally representative hospital discharge records, from the Kids´ Inpatient Database (KID), Healthcare Cost and Utilization Project (HCUP), Agency for Healthcare Research and Quality coded with International Classification of Diseases (Healthcare Cost and Utilization Project (HCUP) 2018), Ninth Revision (ICD-9-CM) for the years 2003, 2006, 2009, and 2012. We also conducted a cross-sectional study for the KID2016 dataset coded with ICD10-CM to estimate the pediatric ADS-related hospital utilization for the year. Excluding transferring discharges: we evaluated the discharge records for those aged 0 to 19 years diagnosed with any of ADS of central nervous systems including multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), acute disseminated encephalomyelitis (ADEM), optic neuritis (ON), transverse myelitis (TM) and demyelinating disease not specified (DDNS). For the trend analysis, we used variance-weighted regression and Poisson regression for the annual hospitalization rate, total hospital charges and hospital days associated with the ADS hospitalizations for the year 2003 to 2012. Results: We estimated a total of 1,292 ADS-related hospitalizations (95%CI: 1127–1,458) in 2003, 2104 hospitalizations (95%CI: 1823–2385) in 2006, 2851 hospitalizations (95%CI: 2499–3203) in 2009, and 3501 hospitalizations (95%CI: 3058–3945) in 2012 among those aged 19 years or younger with diagnoses of ADS. There was an increase in the proportion of the inpatient hospital cost attributed to ADS from 0.06% in 2003 to 0.20% in 2012. The annual hospitalization rates relative to pediatric ADS were 1.59/100,000 (95%CI: 1.51–1.68) in 2003 and 4.21/100,000 (95%CI: 4.07–4.35) in 2012. In the cross-sectional analysis for the year 2016 coded by ICD10-CM, the number of pediatric ADS related hospitalizations were 4,568, constituting 0.30% of the total pediatric hospitalization cost. The annual hospitalization rate for the year 2016 was estimated to be 5.51/100,000. Conclusion: Hospital utilization by pediatric patients with ADS increased during the period 2003 through 2012. The cross-sectional analysis for the year 2016 indicated that the trend could be ongoing, although the direct comparison was not feasible due to the changes in the coding system of the dataset from ICD9-CM to ICD10-CM. Although relatively rare, pediatric ADS warrant long-term follow-ups and hospitalizations, impacting the developmental trajectory of the affected children and the lives of their family members. Th potentially increasing trend of pediatric ADS hospital utilization should be acknowledged when allocating and planning future resources and supporting programs.

Original languageEnglish
Pages (from-to)150-157
Number of pages8
JournalMultiple Sclerosis and Related Disorders
Publication statusPublished - 2019 Sept


  • Acquired demyelinating syndromes (ADS)
  • Chronic Complex Conditions (CCC)
  • HCUP Kids' Inpatient Database (KID)

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


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