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Published on: June 30, 2014
Epidemiology and Impact of Social Hardships in Children With Multiple Sclerosis in the United States
Elizabeth Wilson1, Huong D Meeks1, Bradley J Barney1
1From the Department of Neurology (E. Wilson), Cincinnati Children's Hospital, OH; Department of Neurology (E. Wilson, M.P.G., L.A.B.), Boston Children's Hospital, MA; Department of Pediatric Neurology (E. Wilson, K.C., T.C.), Massachusetts General Hospital, Boston; Department of Pediatrics (H.D.M., B.J.B., M.W., T.C.C., J.W.R.), University of Utah, Salt Lake City; Department of Neurology (M. Rodriguez, J.-M.T.), Mayo Clinic, Rochester, MN; Department of Neurology (M. Rensel, A.W.A.), Cleveland Clinic, OH; Department of Neurology (L.B.K.), New York University Medical Center, NY; Department of Neurology (T.E.L., K.S.F., N.M.S.), Texas Children's Hospital, Houston; Department of Neurology (T.L.S.), Children's Hospital Colorado, Aurora; Department of Neurology (S.S.M.), Washington University in St. Louis, MO; Department of Neurology (E. Waubant, A.V.), UCSF Weill Institute for Neurosciences, University of California San Francisco; and Department of Neurology (Y.S.W., J.M.N.), University of Alabama at Birmingham.
Insights
Social determinants of health impact pediatric multiple sclerosis (MS) patients, with hardships linked to earlier onset and faster disease progression. Lack of insurance increases attrition and disability, highlighting disparities in care.
Area of Science:
- Neurology
- Public Health
- Pediatrics
Background:
- Social determinants of health (SDOH) significantly influence patient health outcomes.
- The impact of SDOH on pediatric-onset multiple sclerosis (POMS) is not well-understood.
- Understanding these factors is crucial for equitable care in POMS.
Purpose of the Study:
- To determine the frequency of adverse SDOH in POMS patients.
- To assess social hardships as barriers to disease-modifying therapy (DMT) initiation.
- To explore the association between adverse SDOH and disease outcomes, including study attrition.
Main Methods:
- Retrospective multicenter observational study using the US Network of Pediatric MS Centers database.
- Inclusion of patients diagnosed with POMS.
- Analysis of demographic variables, time to DMT initiation, Expanded Disability Status Scale (EDSS) score, steroid treatment, time to second event, and study attrition.
Main Results:
- 66% of POMS patients reported social hardships.
- Hardships correlated with younger age at symptom onset and diagnosis.
- Lack of private insurance was linked to increased study attrition and higher EDSS scores.
- No difference in time to DMT initiation was observed, but hardships were associated with steroid use for the first event and shorter time to a second event.
Conclusions:
- Adverse social determinants of health are prevalent in POMS and associated with disease characteristics and progression.
- Lack of private insurance is a significant factor in study attrition and poorer outcomes.
- Further research is needed to elucidate the complex relationship between SDOH and POMS pathophysiology and outcomes.
Background And Objectives:
Social determinants of health (SDOH) affect patient health outcomes, but the impact on patients with pediatric-onset multiple sclerosis (POMS) has not been well studied. Study objectives were to (1) describe the frequency of adverse SDOH, (2) evaluate social hardships as a potential barrier to the initiation of disease-modifying therapy (DMT), and (3) explore the association between adverse SDOH and disease outcomes in POMS, as well as study attrition.
Methods:
This was a retrospective multicenter observational study conducted through the United States Network of Pediatric MS Centers database. Participants were patients diagnosed with POMS (excluding primary progressive MS). The primary outcome was time to initiation of DMT. Secondary outcomes included most recent Expanded Disability Status Scale (EDSS) score, steroid treatment for the first event, time to second event, and study attrition. Demographic variables and clinical outcomes were compared between patients with and without hardships (maternal education of high school or less, public insurance/no insurance, or single/no-income household). Multivariable regression models were used to assess the impact of social hardship on study outcomes.
Results:
There were 996 total participants (69% female, mean age at symptom onset and EDSS score [±SD] were 14.2 ± 3 and 1.2 ± 1.1, respectively). Of 768 patients with complete demographic information, 66% reported a hardship. Hardship was associated with younger age at symptom onset and diagnosis. While there was no difference in time to DMT initiation, patients with hardship were more likely to receive steroids for the first event (odds ratio [OR] 1.66, 95% CI 1.21-2.26, p = 0.002). Lack of private insurance was associated with increased risk of study attrition (OR 1.85, 95% CI 1.14-3.00, p = 0.012) and higher EDSS score (β = 0.15, 95% CI 0.01, 0.28). Living in a no-income household (vs dual-income) was associated with a shorter time to second event (hazard ratio 1.33, 95% CI 1.02-1.74, p = 0.034).
Discussion:
The experience of hardships is common and associated with younger age at symptom onset and diagnosis, as well as shorter time to second event. Lack of private insurance is associated with study attrition and a higher EDSS score despite no difference in time to initiating DMT. There may be differences in early disease pathophysiology related to social hardship, and future studies are needed to better understand this complex relationship.
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