Determinants of health-related quality of life in multiple sderosis: the role of illness intrusiveness.

The relationship between the cognitive and physical aspects of multiple sclerosis (MS) and health-related quality of life (HRQL) was examined with particular focus on illness intrusiveness as a mediator of this relationship. Disease severity, cognitive functioning HRQL, depression, and illness intrusiveness were assessed in 90 patients with MS. Disease severity (Expanded Disability Status Scale [EDSS]) predicted physical aspects of HRQL (SF-36 Physical Component Summary [PCS], fatigue, and bladder control). Information-processing speed (Paced Auditory Serial Addition Test [PASAT]) predicted mental and emotional aspects of HRQL (SF-36 Mental Component Summary [MCS]). However, both the EDSS and the PASAT predicted depression. Illness intrusiveness was significantly correlated with all indicators of HRQL Illness intrusiveness also mediated the manner in which disease severity predicted: physical health, fatigue, and depression. Results underscore the need to assess MS and its impact more broadly rather than relying on traditional mobility-centered assessments. While in most cases physical indices of disease predict physical quality of life and cognitive assessments predict mental and emotional quality of life, the individuals perception of MS is also a major factor contributing to quality of life. MS dearly affects multiple aspects of life and activity, as illustrated by the broad and powerful network of relationships between illness intrusiveness and all aspects of HRQL Perceptions of illness intrusiveness appear to be a central and essential measure of the impact of MS on HRQL.

Rehabilitation of intimacy and sexual dysfunction in couples with multiple sclerosis.

Sexual dysfunction is a highly prevalent symptom of multiple sclerosis (MS), with little published research on effective treatments. This pilot study tested the efficacy of a counseling intervention in nine couples utilizing a quasi-experimental research design. The intervention consisted of 12 counseling sessions, communication with the MS medical treatment team, education, and tailoring symptomatic treatments so they interfere less with sexual function. Repeated measures analysis of variance indicated significant improvements in affective and problem-solving communication, marital satisfaction, and sexual satisfaction during the treatment vs. the waiting list phase of the study (F=1.7, P<.001). MS patients and their spouses reported similar levels of improvement.

Recent developments in the assessment of quality of life in multiple sclerosis (MS).

Multiple sclerosis (MS) and its treatment have broad-ranging effects on quality of life. This article reviews recent efforts to assess the impact of MS on activities of daily living (ADLs) and health-related quality of life (HRQL), and describes the development of the Multiple Sclerosis Quality of Life Inventory (MSQLI). The MSQLI is a modular MS-specific HRQL instrument consisting of a widely-used generic measure, the Health Status Questionnaire (SF-36), supplemented by nine symptom-specific measures (covering fatigue, pain, bladder function, bowel function, emotional status, perceived cognitive function, visual function, sexual satisfaction, and social relationships). Content validation consisted of evaluating its adherence to a conceptual model of the impact of MS, and review by MS specialists (neurologists and allied health professionals), HRQL experts, patients, and caregivers. The reliability and construct validity of the MSQLI were rigorously evaluated in a field test with 300 North American patients (198 female, 102 male) with definite MS (Poser criteria) and a broad range of physical impairment (EDSS=0. 0-8.5). This article concludes by comparing the MSQLI with two other MS-specific HRQL measures (MS Quality of Life-54 (QOL-54) and Functional Assessment of Multiple Sclerosis (FAMS)) and discussing key issues to consider in selecting an HRQL instrument for a collaborative database.

Helplessness, self-efficacy, cognitive distortions, and depression in multiple sclerosis and spinal cord injury.

The aim of this study was to determine if learned helplessness, self-efficacy, and cognitive distortions would predict depression in a sample of 80 individuals with multiple sclerosis (MS) and 80 individuals with a spinal cord injury (SCI). As MS and SCI usually present with disparate disease courses and etiologies, a secondary objective was to determine if individuals with MS would exhibit greater levels of helplessness, cognitive distortions, and depression and lower levels of self-efficacy than those with SCI. Results indicated that helplessness and self-efficacy significantly predicted depression for both the MS and SCI groups after controlling for confounding variables. Cognitive distortions had no independent effect, indicating that cognitive distortions may have caused feelings of helplessness and low self-efficacy and, in this way, had indirect effects on depression. The MS group exhibited significantly greater levels of depression and helplessness and significantly lower levels of self-efficacy than the SCI group. It was hypothesized that it may have been the combination of an unpredictable course of disease activity and the possibility of being affected by MS in many different ways that produced greater feelings of depression, helplessness, and low self-efficacy in the MS group.

A program to facilitate retention of employment among persons with multiple sclerosis.

OBJECTIVES: The objective was to develop and evaluate the feasibility of a medical-community job-retention model in MS. STUDY DESIGN: 43 individuals with MS at risk for losing their jobs were randomized to one of two groups. Both received standard medical care. The experimental group received specialized services geared toward job-retention conducted by medical personnel and an employment specialist. The control group received only standard medical care. Both groups were followed for 1 year. RESULTS: The new program was feasible, however, participants made little use of its services. At the I-year follow-up there was no difference between the two groups in job retention. CONCLUSIONS: A combined medical-community job-retention program is feasible in MS. However, patients do not generally wish to take advantage of job-retention services until an employment crisis develops. Future programs should develop more effective approaches to early intervention to realize their maximum potential.

Psychosocial, Affective, and Behavioral Consequences of Multiple SclerosisTreatment of the "Whole" Patient.

Multiple sclerosis (MS) challenges the individual, the family, and society because (1) it can produce wide-ranging functional losses; (2) it is generally progressive with functional losses increasing over time; and (3) its course is unpredictable. Persons affected by MS respond by (1) experiencing changes in their perception of themselves and their world; (2) altering their social roles; and (3) undergoing a variety of emotional responses, especially depression and grief over the losses caused by the illness. Psychosocial interventions that address MS challenges include (1) educational interventions such as lectures, workshops, and books; (2) supportive interventions such as counseling and support groups; (3) psychoeducational interventions such as communication skills training; and (4) somatic therapies such as antidepressants. The unpredictable and progressive course of MS means that affected individuals face a lifetime of periodic challenge. Comprehensive care in MS must address the psychosocial challenges of the illness on a long-term basis. In this way MS care can address the whole patient.

Stress, Multiple Sclerosis, and Everyday FunctioningA Review of the Literature with Implications for Intervention.

Numerous studies have described an association between stress and the onset or exacerbation of multiple sclerosis (MS). Most of the studies that have been conducted to date, however, have had methodological flaws including: (1) retrospective designs, (2) inadequate or absent control groups, (3) small sample sizes, (4) clinical measures that are insensitive to underlying disease activity, and (5) wide variation in the measurement of stress. Animal models of MS have enabled researchers to examine the effects of stress directly in the central nervous system. Stress affects three biological systems that may be dysregulated in MS: the neuroendocrine system, the sympathetic nervous system, and the serotonergic neurotransmitter system. Future stress-MS research should evaluate the relationship between stress and these systems.

Endogenous event-related potentials as indices of dementia in multiple sclerosis patients.

Auditory event-related potentials (ERPs) were recorded in a "double oddball" paradigm requiring an easy and a hard pitch discrimination from multiple sclerosis (MS) patients with and without dementia, and a group of age and sex matched normal subjects. Cognitive function was assessed by a short battery of neuropsychologic (NP) tests, and the two groups of MS patients were selected on the basis of substantial non-overlapping degrees of cognitive deficit in the demented as compared to the non-demented group. The N100, P200 and P300 ERP components were longer in latency in the demented patients, and the N100-P300 interval was prolonged as well, compared to the non-demented patients, whose ERP latencies did not differ from those of the normal subjects. Increased P300 latency was associated with poorer performance on the NP tests, especially those sensitive to impairment of learning and retrieval from memory. The reaction times of both patient groups were prolonged as compared to the controls, whereas the accuracy of the demented patients was significantly poorer than that of the non-demented patients.

A prospective study of depression and immune dysregulation in multiple sclerosis.

This study examined psychologic distress and immune function in patients with chronic-progressive multiple sclerosis participating in a placebo-control trial of cyclosporine. Immune measures included percentages and absolute numbers of CD2+, CD4+, CD8+, Leu-11-b+, HLA-DR (IA+), and transferrin-receptor-positive cells, which were evaluated by immunofluorescence using monoclonal antibodies. Distress was measured with self-report scales. The Expanded Disability Status Scale assessed neurologic disability. Subjects were followed up for 2 years, and their high-depressed and low-depressed times were compared. Times of greater depression were associated with lower CD8+ cell numbers and CD8+%, and a higher CD4/CD8 ratio. CD4+ cell numbers and percent were also higher when subjects were depressed, but only in the placebo group. There were no differences in Expanded Disability Status Scale when subjects were more depressed. Evaluation of a single subject revealed that Ia+ and transferrin-receptor-positive lymphocytes increased 3 months before distress increased. It was concluded that distress is associated with immune dysregulation in multiple sclerosis, although the mechanisms of this association have yet to be delineated.

High-dose oral baclofen: experience in patients with multiple sclerosis.

We reviewed a 10% random sample of charts from an outpatient clinic for multiple sclerosis to determine the frequency with which baclofen was prescribed for spasticity in high doses (greater than 80 mg/d). About 20% of patients had taken high-dose baclofen, and 15% were still receiving a high dose. Taking a high dose was not associated with discontinuing treatment.

A study of fatigue in systemic lupus erythematosus.

Fifty-nine patients with systemic lupus erythematosus were evaluated by questionnaires, histories, physical examinations and routine laboratory studies in order to better understand their fatigue. The fatigue severity scale (scored from 1 to 7) was used to measure fatigue and yielded a mean score +/- SD of 4.6 +/- 1.5. Fifty-three percent of the patients reported that fatigue was their most disabling symptom. Although perceived as severe, the symptom of fatigue did not correlate significantly with any of the laboratory measures. However, there was a significant correlation between fatigue and the physician's rating of disease activity. Fatigue also correlated significantly with depression which accounted for 21% of the variation in fatigue scores.

Guidelines for neuropsychological research in multiple sclerosis.

Acquisition of scientific information regarding the neuropsychological aspects of multiple sclerosis has been hampered by studies using small, inadequately described patient and control samples and a wide array of cognitive test procedures that hinder multicenter data pooling. Based on a review of key issues of clinical need and experimental interest, research guidelines are proposed for investigations in this burgeoning research area. The guidelines include suggestions for sampling methods, population characterization, and control groups as well as a recommended core battery of neuropsychological tests for use in this population. It is hoped that these guidelines will advance knowledge about the neuropsychology of multiple sclerosis by helping to promote sound experimental design, facilitate cross-study comparison, and encourage multicenter collaborative efforts.

The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus.

Fatigue is a prominent disabling symptom in a variety of medical and neurologic disorders. To facilitate research in this area, we developed a fatigue severity scale, subjected it to tests of internal consistency and validity, and used it to compare fatigue in two chronic conditions: systemic lupus erythematosus and multiple sclerosis. Administration of the fatigue severity scale to 25 patients with multiple sclerosis, 29 patients with systemic lupus erythematosus, and 20 healthy adults revealed that the fatigue severity scale was internally consistent, correlated well with visual analogue measures, clearly differentiated controls from patients, and could detect clinically predicted changes in fatigue over time. Fatigue had a greater deleterious impact on daily living in patients with multiple sclerosis and systemic lupus erythematosus compared with controls. The results further showed that fatigue was largely independent of self-reported depressive symptoms and that several characteristics could differentiate fatigue that accompanies multiple sclerosis from fatigue that accompanies systemic lupus erythematosus. This study demonstrates (1) the clinical and research applications of a scale that measures fatigue severity and (2) helps to identify features that distinguish fatigue between two chronic medical disorders.

Fatigue in multiple sclerosis.

Fatigue is a frequent symptom in multiple sclerosis (MS) that can interfere with a patient's daily functioning. The cause of MS fatigue, its clinical characteristics, and its relationship to other symptoms remain poorly understood. Structured interviews were conducted with 32 patients with MS and 33 normal healthy adults. Fatigue proved to be both more frequent and more severe among the patients with MS. Multiple sclerosis fatigue was unrelated to either depression or global impairment. Multiple sclerosis fatigue appears to be a distinct clinical entity, often disabling, that can be distinguished from normal fatigue, affective disturbance, and neurologic impairment.

Trimodal evoked potentials compared with magnetic resonance imaging in the diagnosis of multiple sclerosis.

Twenty-three patients with the clinical diagnosis of possible multiple sclerosis (MS) were tested with magnetic resonance imaging (MRI) and trimodal evoked potentials. Fourteen patients showed abnormalities on both MRI scans and at least one evoked potential modality (65%). Four patients had normal MRI scans but at least one abnormality on evoked potential testing (17%). One patient had normal triple evoked potentials with an abnormal MRI result. Four patients had normal results on both MRI and triple evoked potential testing; two of these patients were later found to have immunologic abnormalities in the cerebrospinal fluid consistent with the diagnosis of MS. Combined evoked potential testing was found to have a higher sensitivity than MRI in confirming a diagnosis of MS. Three patients with the clinical diagnosis of definite MS were also tested. All these patients showed abnormalities on evoked potential testing, although one patient had a normal MRI result. Of all 26 patients who were studied, 17 showed abnormal MRI results and 21 showed at least one abnormality on evoked potential testing.