Hoarding and cluttering behavior (HCB) in the general population has been shown to greatly affect safety and quality of life. However, the prevalence and impact on safety and daily living challenges in MS patients has been understudied.

Consecutive patients the NYULMC MS Center were recruited to complete self report surveys at baseline and a one-year followup. Questionnaires to assess hoarding included the Hoarding Rating Scale (HRS), Saving Inventory - Revised (SI-R) and Clutter Image Rating sale (CIR). Impact of hoarding behavior on patients was assesed using the Activities Of Daily Living for Hoarding (ADLH).

284 patients completed baseline surveys, 118 completed follow-up surveys. Demographics of the cohort: mean age 44.0 ± 12.0, disease duration 12.7 ± 9.5 years, 71% female, 41% non-White, mean PDDS 1.72 ± 1.89. Clinically significant hoarding was observed in 10.4% (vs. 5% in the general population) and varied significantly by race/ethnicity (p=0.004). Hoarding scores remained stable (ICC=0.995) between baseline and follow-up. In a linear regression model with ADLH scale as the outcome, disability and HRS were the most significant predictors. 

HCB has a significantly higher prevalence in the MS population compared with the general population. Moreover, MS disability and hoarding scores were significant predictors of increased difficulty in performing activities of daily living due to the clutter. This suggests that the impact of hoarding behavior on MS patients is augmented relative to their underlying disability due to MS. Given the wider impact of HCB on health and psychosocial well-being demonstrated in the general population, the results of this study highlight the importance of identifying and characterizing HCB in MS patients as a necessary precursor for therapeutic intervention.