The combined use of generic and disease-specific health-related quality of life (HRQoL) measures gives a clearer representation of the effects of multiple sclerosis on patients’ quality of life and enables a more accurate comparison across countries, a study has found.
“The effects of MS on HRQOL in real-world patients may be underestimated,” the researchers wrote.
“The combined use of both generic and disease-specific HRQOL instruments as outcome measures in clinical trials and observational studies allow for a deeper understanding about specific health needs of MS patients,” they added.
The study, “Health-related quality of life of multiple sclerosis patients: a European multi-country study,” was published in Archives of Public Health.
HRQoL is essentially a measure of the impact that a disease has on patients’ quality of life. While there are a number of instruments that assess HRQoL, disease-specific measures are better tailored to patients with a condition, whereas more generic ones enable comparisons with the general population and people with other diseases.
However, the inconsistent use of generic and disease-specific HRQoL tools limits the ability to compare results from MS observational studies and clinical trials.
Researchers at Erasmus University Rotterdam, in The Netherlands, set out to use generic and disease-specific tools to assess the HRQoL of adult MS patients in Europe.
The team used the generic EuroQOL (EQ-5D-5L) and disease-related Multiple Sclerosis Quality of Life (MSQoL)-54 measures. The MSQoL-54 comprises two composite scores from the generic SF-36 health survey plus some MS-specific metrics.
Patients were surveyed online from June to October 2019. A total of 182 patients completed the survey, including 88 from the Netherlands, 58 from France, 15 from the U.K., 10 from Spain, and 11 from elsewhere. Participants were mostly female (78%), with a median age of 43.
In the generic HRQoL measure, the average health utility score, which measures patients’ state of health on a scale from 0 (death) to 1 (full health), was 0.65. About a third of patients reported moderate mobility problems, slight to moderate pain, and discomfort, and 44% also had moderate problems with daily activities.
Reports of anxiety and depression and problems with self-care were generally low. Greater disability scores were significantly associated with more problems with mobility, self-care, pain and discomfort, and daily activities, but not anxiety or depression in the generic HRQoL measure.
Also, no difference was observed between countries in the generic HRQoL measure.
Using the MSQoL-54, the mean physical health composite score was 42.5 and the mental health composite score was 58.3. On this scale, a score of 100 denotes a perfect health status.
The physical health score differed significantly between countries, with the lowest score being observed in the U.K. (31.9) and the highest score in Spain (55.7). In contrast, no significant difference was observed between countries in mental health scores.
Statistical analysis of the data then revealed that a diagnosis of primary progressive MS was associated with lower scores on the general tool, as well as lower physical and mental composite scores on the MS-specific assessment. The severity of disability was also associated with lower scores on the generic HRQoL measure and lower physical composite scores on the specific measure.
“Compared to previous research, our results indicate that the HRQOL of MS patients may have been overestimated,” the investigators wrote. “Future studies should be designed to specifically examine cross-country differences and controlling for more information than we have included in this study.”
The study may be limited by its design to analyze HRQoL in Europe rather than compare cross-country differences, its small sample sizes from the U.K. and Spain, the use of self-reported disability data, and the exclusion of more recently developed disease-specific HRQoL instruments.
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