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

详细信息    查看全文

• 作者：Judith M. Sonder ; Rebecca Holman ; Dirk L. Knol ; Libertje V.A.E. Bosma ; Chris H. Polman ; Bernard M.J. Uitdehaag
• 关键词：Multiple sclerosis ; Outcome measurement ; Proxy measurement ; Agreement ; Patient reported outcome ; PRO
• 刊名：Journal of the Neurological Sciences
• 出版年：15 November, 2013
• 年：2013
• 卷：334
• 期：1-2
• 页码：143-147
• 全文大小：196 K

文摘

Background

Proxy respondents, partners of multiple sclerosis (MS) patients, can provide valuable information on the MS patients' disease. In an earlier publication we found relatively good agreement on patient reported outcomes (PROs) measuring physical impact and functioning, but we found large differences on (neuro)psychological scales.

Objective

We aim to identify patient and proxy related variables explaining differences between patients' and proxies' ratings on five PROs.

Methods

We report on data from 175 MS patients and proxy respondents. Regression analyses were performed, using as dependent variable the mean differences on five scales: Physical and Psychological scale of the Multiple Sclerosis Impact Scale (MSIS-29), the Multiple Sclerosis Walking Scale (MSWS), Guy's Neurological Disability Scale (GNDS) and the Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ). The independent variables were patient, proxy and disease related variables.

Results

Caregiver strain was significantly related to differences between patient and proxy scores for all five PROs. A higher level of patient anxiety on the HADS was linked to larger differences on all PROs except the GNDS. In addition, cognitive functioning, proxy depression, walking ability, proxy gender and MS related disability were contributing to the discrepancies.

Conclusion

We found several patient and proxy factors that may contribute to discrepancies between patient and proxy scores on MS PROs. The most important factor is caregiver burden.