Work productivity in relapsing multiple sclerosis: associations with disability, depression, fatigue, anxiety, cognition, and health-related quality of life.

OBJECTIVES: To characterize work productivity in relapsing multiple sclerosis (MS) by using a work productivity scale and to identify associations between work productivity and disability, depression, fatigue, anxiety, cognition, and health-related quality of life. METHODS: Three hundred seventy-seven subjects with a clinically isolated syndrome or relapsing remitting MS participated in the study. Subjects underwent neurological examinations and completed patient-reported outcome and cognitive measures. Subjects also completed the Work Productivity and Activity Impairment Questionnaire: General Health to quantify absenteeism (missing work because of health problems), presenteeism (impairment while working), overall work impairment, and daily activity impairment attributable to health problems. Univariate correlations and multivariate models were used to determine the associations between each work productivity variable and clinical, patient-reported outcome, and cognitive measures. RESULTS: Seventy-six percent of subjects were employed. Fourteen percent of working subjects reported absenteeism, and 47% reported presenteeism. The mean work time lost because of absenteeism was 4%, and the mean work time lost because of presenteeism was 12%. Absenteeism was not significantly associated with disease or patient-reported outcome measures. Statistically significant correlations (0.32-0.53) were found between presenteeism and increasing disability, fatigue, depression, anxiety, and reduced quality of life. No associations were observed between presenteeism and disease duration or cognitive function. CONCLUSIONS: Subjects with clinically isolated syndrome/relapsing remitting MS reported substantial work productivity losses due to presenteesim. Presenteeism was associated with increasing fatigue, depression, anxiety, and reduced quality of life. It is possible that the early identification and treatment of fatigue and mental health symptoms may improve productivity while working and extend employment for individuals with MS.

Patient reported outcomes in benign multiple sclerosis.

BACKGROUND: Benign MS patients have a mild course of disease and show no or minimal accumulation of disability over time. Little is known about the patient reported outcomes (PROs) in benign MS. OBJECTIVE: The objective of the study was to compare PROs in benign MS patients and patients with similar disease duration or disability status, and to investigate how the definition of benign MS affected this outcome. METHODS: Two groups of Benign MS patients (disease duration ≥15 years, Expanded Disability Status Scale [EDSS] score ≤1.5 [Benign-1.5], or ≤3.0 [Benign-3]) were compared with four other MS groups: disease duration ≥15 years, EDSS score >3.0 (Late-MS); disease duration <15 years, and EDSS score ≤1.5 (Low-EDSS-1.5), or ≤3.0 (Low-EDSS-3); disease duration ≤5 years (Early-MS). PROs included measures of QOL, fatigue, depression, and social support. Cognitive function was also assessed. RESULTS: Both benign groups had better PROs than Late MS patients on all measures (p < 0.05). QOL, depression, and fatigue were significantly different between Benign-1.5 and Early-MS groups (p < 0.01). Benign-1.5 had higher mental health QOL than Low EDSS-1.5, but was otherwise similar. Benign-3 patients had worse depression than Early-MS (p < 0.01), and worse cognition compared with Low-EDSS-3 (p = 0.033). Benign-1.5 had higher QOL and lower fatigue (p < 0.005) than Benign-2-3, and showed a marginally significant difference in cognitive functioning (p = 0.055). CONCLUSIONS: Patients with benign MS had better PROs than other groups of MS patients, suggesting that both disease duration and disability influence PROs. The study also showed a difference in PROs based on the way benign MS was defined.

Families' Experience of Pediatric Onset Multiple Sclerosis.

This study interviewed parents to understand families' experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.

Depression and fatigue in patients with multiple sclerosis.

BACKGROUND: Previous research has examined the components of depression and fatigue in multiple sclerosis (MS), but the findings have been inconsistent. The aim of this study was to explore the associations between overall and subscale scores of the Center for Epidemiologic Studies-Depression Scale (CES-D) and the Modified Fatigue Impact Scale (MFIS) as well as the longitudinal changes in scores in a large cohort of MS patients. METHODS: MS subjects who completed a battery of patient reported outcome (PRO) measures including the CES-D and MFIS (N=435) were included in our analysis. At the first available MFIS measurement, Pearson's correlation coefficient was used to estimate the association between the CES-D and MFIS in terms of both total scores and subscale scores. In addition, the longitudinal change in each total score and subscale score was estimated using a linear mixed model, and the association between the measures in terms of longitudinal change was estimated using Pearson's correlation coefficient and linear mixed models. RESULTS: At baseline, 15% of subjects were classified as high on both depression and fatigue scales, 16% were classified as high on the fatigue scale only, and 9% were classified as high on the depression scale only. There was a high correlation between CES-D and MFIS total scores (r=0.62). High correlations were also observed between the somatic and retarded activity subscales of the CES-D and each of the MFIS subscales (r≥0.60). In terms of longitudinal change, the change over the first year between the CES-D and MFIS total scores showed a moderate correlation (r=0.49). Subjects with high fatigue scores but low depression scores at baseline were more likely than subjects with low baseline fatigue and depression scores to develop high depression scores at follow-up. CONCLUSIONS: Our study demonstrated that depression and fatigue in MS share several features and have a similar longitudinal course. But using cut-off scores to define depression and fatigue, our study also found that non-depressed subjects with high fatigue may be at a greater risk for developing depression.

Risk attitudes and risk perceptions in individuals with multiple sclerosis.

BACKGROUND: Little is known about risk attitudes and risk perceptions in multiple sclerosis (MS). OBJECTIVES: The objectives of this paper are to investigate the range of risk attitudes and risk perceptions and examine associations between risk attitudes and risk perceptions and demographic and clinical features of the disease. METHODS: A total of 223 individuals completed a risk questionnaire. Risk attitude was measured using two rating scales and a standard gamble scenario. Risk perception was measured by asking participants to estimate the likelihood of disease progression and the likelihood of minor and serious side effects associated with common MS therapies. RESULTS: Participants were risk neutral overall and risk averse on issues related to health and safety. There was a significant association between disease duration and risk attitude, with patients with longer disease duration showing greater tolerance for risk. On the standard gamble scenario, males were significantly more likely to take treatments with a likelihood of death of 1:10,000 or 1:100,000 than females. Individuals with higher disability or a progressive disease course were significantly more likely to expect progression at two, five and 10 years. CONCLUSION: Individuals with MS demonstrate low tolerance for risk. Risk attitudes and perceptions are influenced by some demographic and clinical features of the disease.

Treatment satisfaction in multiple sclerosis.

BACKGROUND: Disease-modifying therapies (DMTs) for the treatment of multiple sclerosis (MS) are associated with inconvenient methods of administration, significant side effects, and low adherence rates. This study was undertaken to compare treatment satisfaction in MS patients treated with interferon beta-1a intramuscular (IFNß-1a IM), interferon beta-1a subcutaneous (IFNß-1a SC), glatiramer acetate (GA), and natalizumab (NTZ), and to examine the associations between treatment satisfaction ratings and adherence to therapy. METHODS: Two hundred twenty-six treated MS patients completed the Treatment Satisfaction Questionnaire for Medicine. Multivariable models were used to compare treatment satisfaction across groups. RESULTS: There were no statistically significant differences in overall treatment satisfaction. The NTZ group reported greater satisfaction with the ability of the medication to treat or prevent MS than the IFNß-1a IM group. The NTZ group also reported higher overall convenience scores than the IFNß-1a IM group and greater satisfaction with ease of use of the medication than the interferon and GA groups. Patients in the IFNß-1a IM group reported less satisfaction with ease of planning when to use the medication than those in the other groups. Convenience was associated with adherence in IFNß-1a SC- and GA-treated patients, with lower convenience scores associated with lower adherence. CONCLUSIONS: These results may be useful to MS patients and health-care providers facing decisions about DMT use.

The association between cognitive impairment and quality of life in patients with early multiple sclerosis.

Cognitive deficits are common in patients with multiple sclerosis (MS) and may be observed early in the course of the disease. Current knowledge about the association between cognitive impairment and health-related quality of life (HQOL) in patients with early MS is limited. We used a well-established battery of cognitive tests and standardized HQOL measures to examine the associations between overall and domain-specific cognitive performance and quality of life in patients with early MS. Ninety-two patients with CIS or MS diagnosed in the previous three years participating in the CLIMB Natural History Study underwent a neurologic examination, neuropsychological evaluation and quality of life assessment. Associations between cognitive scores and HQOL measures were examined. There were no differences between cognitively impaired versus unimpaired subjects on any of the HQOL measures. After controlling for depression, scores on tests of information processing speed were significantly associated with several measures of HQOL including physical well-being, fatigue, and social support. In all cases, correlations between HQOL and cognitive measures were mild. These findings were observed in patients with limited cognitive impairment and minimal physical disability. Our results suggest that cognitive remediation programs aimed at improving cognitive skills may also improve quality of life for patients with early MS.