BACKGROUND: Patient-reported outcome (PRO) scales are often used in multiple sclerosis (MS) research. Full understanding of items can be influenced by disease worsening, mood disturbances and cognitive problems of the MS patient. Earlier research with the Multiple Sclerosis Impact Scale (MSIS-29) showed that proxy respondents (i.e. partners of patients) can provide useful information. OBJECTIVE: To determine agreement between patients and proxy respondents on different MS PRO scales. METHODS: 139 Patients and partners completed the MSIS-29 (Physical and Psychological scale), Multiple Sclerosis Walking Scale (MSWS-12), Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ) and Guy's Neurological Disability Scale (GNDS). We calculated the mean difference and intra-class correlation coefficients (ICC) on scale level and weighted kappas (κ(w)) on item level. RESULTS: On all scales, except MSNQ, the partner score was higher. ICCs were good for MSWS, GNDS and MSIS Physical, and moderate for MSNQ and MSIS Psychological. κ(w) was excellent for MSWS items, fair to good for GNDS, MSIS Physical and MSIS Psychological items, and poor for MSNQ items. CONCLUSION: Partners of patients with MS can be a useful source of information for several PRO scales, especially when the focus is on physical functioning. For psychological functioning this seems to be less reliable.
BACKGROUND:Patient-reported outcome (PRO) scales are often used in multiple sclerosis (MS) research. Full understanding of items can be influenced by disease worsening, mood disturbances and cognitive problems of the MS patient. Earlier research with the Multiple Sclerosis Impact Scale (MSIS-29) showed that proxy respondents (i.e. partners of patients) can provide useful information. OBJECTIVE: To determine agreement between patients and proxy respondents on different MS PRO scales. METHODS: 139 Patients and partners completed the MSIS-29 (Physical and Psychological scale), Multiple Sclerosis Walking Scale (MSWS-12), Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ) and Guy's Neurological Disability Scale (GNDS). We calculated the mean difference and intra-class correlation coefficients (ICC) on scale level and weighted kappas (κ(w)) on item level. RESULTS: On all scales, except MSNQ, the partner score was higher. ICCs were good for MSWS, GNDS and MSIS Physical, and moderate for MSNQ and MSIS Psychological. κ(w) was excellent for MSWS items, fair to good for GNDS, MSIS Physical and MSIS Psychological items, and poor for MSNQ items. CONCLUSION: Partners of patients with MS can be a useful source of information for several PRO scales, especially when the focus is on physical functioning. For psychological functioning this seems to be less reliable.
Authors: David J Weiss; Chun Wang; King Yiu Suen; Jeffrey Basford; Andrea Cheville Journal: Arch Phys Med Rehabil Date: 2021-10-20 Impact factor: 4.060
Authors: Kathrin S Utz; Thomas M A Hankeln; Lena Jung; Alexandra Lämmer; Anne Waschbisch; De-Hyung Lee; Ralf A Linker; Thomas Schenk Journal: PLoS One Date: 2013-11-25 Impact factor: 3.240
Authors: Maria Pia Amato; Dawn Langdon; Xavier Montalban; Ralph H B Benedict; John DeLuca; Lauren B Krupp; Alan J Thompson; Giancarlo Comi Journal: J Neurol Date: 2012-11-23 Impact factor: 4.849