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In reply
We thank both Mitchell et al and Janssens et al for their interest in our article.1 We would like to draw their attention to another recently published paper in Neurology2 on this same cohort and not referenced in this article (submitted at the same time as this manuscript to Archives of Neurology). This describes the levels of impairment, disability, and handicap and adds objective and physician-measured information rather than the subjective patient self-reporting as in this Archives paper.
Mitchell et al make valid points regarding the validity of using medical records to determine QOL. We apologize for any confusion, but all 185 patients filled out the questionnaire (172 of 178 interviewed in person [6 excluded because of dementia] and 13 answered the questionnaire over the telephone, with 1 refusing). The 9 patients that refused the interview had their medical records reviewed and Expanded Disability Status Scale score was ascertained but QOL was not assessed.
We emphasize that the present study in the ARCHIVES reported the patient’s perceived QOL, not the investigators’ opinions nor the caregivers QOL. We did not investigate the effect of psychological, emotional, or other factors. We agree the interpretation of Table 4 is confounded by the lack of a control population for comparison. In contrast, a control population is shown for the SF-36 component of the MSQOL-54.
There is no doubt that MS can have detrimental effects in terms of disability, impairment, handicap, and QOL. However, when examined in a population-based prevalence cohort, many patients are employed, with no or minimal disability, and perceive their QOL as being good. In some ways it depends on whether a person considers their cup to be half-full or half-empty. Most patients said they were never or only a little of the time discouraged (64.4%) or frustrated (58%) with their health. Between 30% and 45% of MS patients perceived the physical functioning, role physical, general health, and vitality domains as better than the US population. Further supporting our conclusions, we found that 62%, 52%, 83%, and 67% perceived themselves as doing better than the US population for bodily pain, social functioning, role emotional, and mental health, respectively.
Janssens et al points are well taken, but the “striking contrast” in the findings are explained by the fact that none of the studies referenced in either letter were based on prevalence cohorts of MS. The issue of response shift is important but the purpose of our study was to present the patient’s perceived QOL, not to investigate factors that may or may not impact the scoring.
The measurement of QOL is difficult and complex. We realize that cognitive and psychological impairments may alter the perception of QOL. Nonpopulation or nonprevalence based studies likely do not include patients that are doing well for 20 years or more, and overestimates bad vs good outcome. Patients with MS need to know that not every patient will have major problems. We feel our study presents a realistic picture for MS patients from Olmsted County where there is a high prevalence for the disease.3
Correspondence: Dr Rodriguez, Department of Neurology, Mayo Clinic, 200 First St SW, Rochester, MN 55905 (rodriguez.moses@mayo.edu).
Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature
Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal
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