Impact of adverse childhood experiences on long-term quality of life in adults with pediatric-onset multiple sclerosis

Abstract

Background:

Little is known about the long-term health-related quality of life (HRQOL) of adults with pediatric-onset MS (POMS) nor the factors that may modify HRQOL in this population.

Objectives:

We sought to define symptom burden and HRQOL among adults with POMS and to interrogate the potential relationship of adverse childhood experiences (ACEs) with HRQOL.

Methods:

In this cross-sectional study, 98 adults with POMS were recruited through the North American Research Committee on Multiple Sclerosis Registry, Nationwide Children’s Hospital, and Ohio State University. Participants completed demographics, Multiple Sclerosis Quality of Life-54 (MSQoL-54), SymptoMScreen, Patient-Determined Disease Steps (PDDS), MS Resiliency Scale (MSRS), and ACEs questionnaires. The Pearson correlations were computed between ACE, MSQoL-54, PDDS, and SymptoMScreen scores. Multivariable linear regression was performed for MSQoL-54 outcomes using ACE and MSRS scores.

Results:

Participants were 90% female with a mean age of 53 years. A higher number of ACEs was associated with poorer physical and mental HRQOL (p = 0.003 and p = 0.01, respectively) and SymptoMScreen (p = 0.002). Higher resiliency scores (MSRS) were associated with greater physical and mental HRQOL (both p < 0.001).

Conclusion:

ACEs may have a long-standing impact on the lived experience of POMS patients into adulthood. Future work should explore the role of resiliency in mitigating these effects.