Abstract
BackgroundThis study examined whether MS patients and proxy respondents agreed on change in disease impact, which was induced by treatment. This may be of interest in situations when patients suffer from limitations that interfere with reliable self-assessment, such as cognitive impairment.MethodsMS patients and proxies completed the Multiple Sclerosis Impact Scale (MSIS-29) before and after intravenous steroid treatment. Analyses focused on patient-proxy agreement between MSIS-29 change scores. Transition ratings were used to measure the patient's judgement of change and whether this change was reflected in the MSIS-29 change of patients and proxies. Receiver operating characteristic (ROC) analyses were also performed to examine the diagnostic properties of the MSIS-29 when completed by patients and proxies.Results42 patients and proxy respondents completed the MSIS-29 at baseline and follow-up. Patient-proxy differences between change scores on the physical and psychological MSIS-29 subscale were quite small, although large variability was found. The direction of mean change was in concordance with the transition ratings of the patients. Results of the ROC analyses of the MSIS-29 were similar when completed by patients (physical scale: AUC = 0.79, 95% CI: 0.65 – 0.93 and 0.66, 95% CI: 0.48 – 0.84 for the psychological scale) and proxies (physical scale: 0.80, 95% CI: 0.72 – 0.96 and 0.71, 95% CI: 0.56 – 0.87 for the psychological scale)ConclusionAlthough the results need to be further explored in larger samples, these results do point towards possible use of proxy respondents to assess patient perceived treatment change at the group level.
Highlights
This study examined whether Multiple Sclerosis (MS) patients and proxy respondents agreed on change in disease impact, which was induced by treatment
The dichotomized transition ratings were used in receiver operating characteristic (ROC) analyses to see whether the diagnostic properties of the MSIS-29 were similar when completed by patients or proxy respondents
One patient and one proxy respondent had more than 50% missing items on both scales of the MSIS-29 and were left out of the analyses [23]; one patient withdrew from the study due to worsening disease status and one patient-proxy couple did not complete the MSIS-29 independently from each other
Summary
This study examined whether MS patients and proxy respondents agreed on change in disease impact, which was induced by treatment. The incorporation of self-report measurements in clinical research has a downside; there are several patient groups and situations in which the ability to complete a questionnaire may be impaired Conditions such as cognitive impairment or mood disturbances, which might play a role during the disease course of MS [3,4,5,6], could lead to inaccurate self-report or even loss of information due to missing data. In a previous crosssectional study we found that patient-proxy agreement was good and proxy respondents might be of value in MS research [8] Since factors such as cognitive impairment and mood disturbances are not fixed, the validity of measuring changes over time, which is a crucial requirement for rehabilitation and trials, is especially vulnerable. The objective of this study was to examine whether MS patients and proxy respondents agreed on change in disease impact which was induced by treatment
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
