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The Multiple Sclerosis Performance Test (MSPT): An iPad-Based Disability Assessment Tool
11:35

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Published on: June 30, 2014

Analyzing differences between patient and proxy on Patient Reported Outcomes in multiple sclerosis.

Judith M Sonder1, Rebecca Holman, Dirk L Knol

  • 1Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands; Department of Neurology, VU University Medical Center, Amsterdam, The Netherlands.

Journal of the Neurological Sciences
|September 11, 2013
PubMed
Summary

Caregiver burden significantly impacts discrepancies in patient-reported outcomes (PROs) for multiple sclerosis (MS) patients. Understanding these differences is key to improving care and data accuracy in MS research.

Keywords:
AgreementMultiple sclerosisOutcome measurementPROPatient reported outcomeProxy measurement

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Area of Science:

  • Neurology
  • Psychology
  • Rehabilitation Medicine

Background:

  • Partners of multiple sclerosis (MS) patients can offer insights into patient health.
  • Previous research indicated good agreement on physical patient-reported outcomes (PROs) but significant differences in neuropsychological scales.

Purpose of the Study:

  • To identify patient and proxy variables that explain discrepancies in ratings on five MS-related PROs.
  • To investigate factors contributing to differing perceptions between MS patients and their proxies.

Main Methods:

  • Utilized data from 175 MS patients and their proxy respondents.
  • Performed regression analyses on differences in scores from five PROs: MSIS-29 (Physical and Psychological), MSWS, GNDS, and MSNQ.
  • Included patient, proxy, and disease-related variables as independent factors.

Main Results:

  • Caregiver strain was a significant predictor of score differences across all five PROs.
  • Patient anxiety levels correlated with larger discrepancies in most PROs.
  • Cognitive function, proxy depression, walking ability, proxy gender, and MS disability also contributed to rating differences.

Conclusions:

  • Several patient and proxy factors contribute to discrepancies in MS PROs.
  • Caregiver burden emerged as the most influential factor in these differences.