Depression in persons with multiple sclerosis

This article provides a critical review of what is currently known concerning the nature and scope of depression in persons who have MS. It begins with a discussion of relevant terminology,which is followed by a summary of the research literature concern-ing the prevalence; severity; and risk factors for, and impact of, depression in MS. Assessment issues also are reviewed. Gaps in the literature on the treatment of depression in persons who have MS also are discussed. The article concludes with a discussion of future directions that will improve our understanding of depression, its treatment, and the other side-resilience in the face of a serious neurologic condition.     

Chronic pain in persons with multiple sclerosis

The MS literature clearly indicates that chronic pain is a significant problem for many, although not all, persons with MS. The rates of pain have been found to vary in different studies, from 44% to 80%, depending on the sample and the specific questions used to assess the incidence and severity of pain. What is not clear is the proportion of persons who have acute pain relative to chronic pain. Although the specific frequency of pain problems in patients with MS may not be clear, there is a subgroup of patients (about 38% of those with pain in one sample) who report experiencing severe pain [8]. Preliminary research suggests that chronic pain can have a significant negative impact on a number of aspects of functioning in persons with MS, such as the ability to engage in household work and psychologic functioning. A biopsychosocial model of chronic pain, which has proved to be useful in understanding chronic pain as a primary condition and chronic pain in persons with other physical disabilities, may also be useful for understanding pain in persons with MS. Research,however, has not yet tested the utility of this model among MS populations.Longitudinal research is needed to help us learn how MS-related pain may fluctuate over time and with changes in disease status. There also is a strong need for research that examines access to pain treatment and that evaluates the efficacy of currently available pain treatments in persons with MS. The results of such research, as it is applied to help patients with MS, should contribute to an overall increase in well-being and a decrease in suffering among persons with MS and chronic pain.     

Economic status of families living with multiple sclerosis.

A nation-wide survey of 604 families living with multiple sclerosis was conducted. The sample was recruited through local chapters of the National Multiple Sclerosis Society and the public press. This paper describes the economic impact of the disease on families. There were 427 families in which the woman had multiple sclerosis and 177 families in which the man had the disease. The average duration of the disease was 10 years. Family income was well above the national median income. Thirty-nine per cent of the men and 19% of the women with multiple sclerosis retired because of disability. Income was inadequate to pay for medical expenses in 21% of the families and 25% had inadequate funds to meet basic living expenses. While 80% of the families had health care insurance, for 28% of the families the insurance was inadequate to cover the cost of their illness. The number of children living at home and the amount of health care bills paid out-of-pocket failed to explain why families in the high income group had difficulty meeting their expenses. Factors other than income and proportion of medical expenses covered by insurance determine the economic impact on the family. If health care providers are going to meet all the needs of a family living with multiple sclerosis, a more comprehensive assessment of their economic status is needed.     

Factors relating to carer burden for families of persons with muscular dystrophy.

OBJECTIVE: To assess the burden on family carers of persons with muscular dystrophy living in their homes and to determine factors contributing to carer burden. METHODS: The study included 56 dyads of people with muscular dystrophy and their family carers. The variables for carer burden were compared by logistic regression in 2 carer groups (burden + /burden-). RESULTS: The mean age of the patients with muscular dystrophy was 32.7 years (median 26.7, range 15-65 years) and that of the carers 51 years (median 48, range 30-80 years). The carers reported the care burden using the Zarit Burden Inventory (median score 23, range 0-57/88). Multivariate analysis produced 3 adjusted explicative factors: carer characteristics related to risk of perceived burden are self-report of poor social functioning on the SF-36 (OR = 26.6 (2.6-278); p=0.006), self report of anxiety on the Hospital Anxiety Scale (OR = 7.1 (1.4-36); p=0.02) and being a carer under 48 years of age (OR = 7.8 (1.7-34.5); p=0.007). However, it was difficult to dissociate the different health variables of the carers from each other. CONCLUSION: This approach should lead to better decision-making by medical teams, patients and their carers.     

Complementary and alternative therapy use in persons with multiple sclerosis.

Use of complementary and alternative therapies (CATs) is common with both the general population and with people who have multiple sclerosis (MS). The purpose of this study was to describe the reported use and perceived effectiveness of different CATs in a large sample (N = 621) of people with MS. One-third of the participants reported that they were presently using one or more CATs, and 50% had tried one or more CATs in the past. Most CATs were perceived as being helpful. People who were presently using CATs differed little from those who were not with regard to demographic- and illness-related variables. Use of CATs was positively associated with the practice of other health-promoting behaviors. The frequent use of different CATs suggests that clinicians should systematically and nonjudgmentally inquire about CAT use among their patients.     

Social support among persons with multiple sclerosis

The source and magnitude of perceived social support functions and structure were examined in relation to illness duration, gender, and presence or absence of spouses among 200 persons with multiple sclerosis. The associations between social support variables and a health index, ADL level of functioning, also were examined. Significant gender differences were shown for perceived availability of affect, affirmation, and aid functions. A significant change in the network property, average frequency of relationships, occurred over the chronic illness trajectory. Low to moderate correlations were observed between a number of activities of daily living and both perceived social support functions and network size, particularly for women. Implications for professional staff who provide health services for persons with MS are presented. Further study regarding lower levels of perceived social support in women than men and low levels of informational support in both men and women is suggested.     

Pain in persons with dementia and the direct and indirect impacts on caregiver burden

ObjectivesUnresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship.MethodWe examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM).ResultsModel fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden.ConclusionCaregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.     

Teaching memory strategies to persons with multiple sclerosis

A memory-training program previously used effectively upon persons with head-injury (HI) was conducted upon eight subjects with multiple sclerosis (MS). The program involved computer-assisted teaching of imagery-based mnemonic strategies for recall of lengthy lists of words, and for associating names with faces. Results were similar to those found in individuals with HI, but the MS subjects learned the strategies quickly, and did not appear to require the lengthy training needed by persons with HI. It was concluded that memory training of those with MS may sometimes only require teaching of mnemonic strategies without extensive practice.     

Model for predicting work performance among persons with multiple sclerosis.

A causal model was tested on a sample of 201 MS subjects for the purpose of examining the role of selected demographic factors, work impediments, and work enhancers as predictors of activities essential for performing outside employment, home making, and for personal care. The results showed a relatively good fit of the model to the data through a number of indicators. Explained variance included: 9.0% in work impediments from the direct effect of age; 32.3% in work enhancers--A (job and environmental adjustment, social support, healthful practices) through direct effects from MS duration and work impediments; 9.8% in work enhancers--B (personal attributes) through direct effects from MS duration and work impediments; 61.1% in work performance through direct effects from the antecedent variables (age, education), stress-appraisal variable (work impediments), and coping variables (work enhancers-A, work enhancers-B).     

Test-retest reliability of the Purdue Pegboard for persons with multiple sclerosis.

OBJECTIVE: The Purdue Pegboard test often is used in clinical settings to evaluate changes in clients' fine motor dexterity. The purpose of this study was to determine the test-retest reliability and practice effects of the Purdue Pegboard for persons with multiple sclerosis. In addition, this study compared the reliability of one-trial administration to three-trial administration of the four subtests. METHOD: Thirty-two volunteers from a midwestern community-based maintenance rehabilitation center for persons with multiple sclerosis participated in this study. The participants were administered the four subtests of the Purdue Pegboard, three trials in a row. A second administration was completed 1 week later. Data from 25 participants were analyzed using paired t tests, Pearson product-moment correlations, and intraclass correlation coefficients. RESULTS: The test-retest reliability coefficients ranged from .85 to .90 for one-trial administration and from .92 to .96 for the sum of three trials. No significant practice effects existed except for the sum of three trials of both hands. CONCLUSION: This study suggests that the one-trial administration of the Purdue Pegboard is a sufficiently reliable assessment to use with persons with multiple sclerosis. Findings further suggest that for a person with multiple sclerosis, any changes in Purdue Pegboard scores using one-trial administration may reflect actual change in that person's dexterity, as no practice effect was demonstrated in this study.     

Resistance training improves gait kinematics in persons with multiple sclerosis

OBJECTIVE: To evaluate the effects of an 8-week lower-body resistance-training program on walking mechanics in persons with multiple sclerosis (MS). DESIGN: Repeated-measures design, evaluating gait kinematics before and after an 8-week progressive resistance-training intervention. SETTING: Biomechanics laboratory and fitness center (with conventional, commercially available resistance-training equipment). PARTICIPANTS: Eight ambulatory subjects with MS (age, 46.0+/-11.5 y) with Expanded Disability Status Scale scores ranging from 2.5 to 5.5. INTERVENTION: An 8-week progressive resistance-training program. MAIN OUTCOME MEASURES: Kinematic gait parameters including knee range of motion, duration of stance, swing, and double-support phases in seconds and as percentages of the stride time, percentage of stride time spent in stance, swing, and double-support phases, step length, foot angle, stride length, velocity, step width, and toe clearance for both the more affected and less affected lower limbs. Isometric strength, 3-minute stepping, fatigue, and self-reported disability were also measured. RESULTS: After 2 months of resistance training, there were significant increases (P<.05) in percentage of stride time in the swing phase, step length, stride length, and foot angle; and significant decreases (P<.05) in percentage of stride time in the stance and double-support phases, duration of the double-support phase, and toe clearance. Isometric leg strength improved (P<.05) in 2 of the 4 muscle groups tested. Fatigue indices decreased (P=.04), whereas self-reported disability tended to decrease (P=.07) following the training program. Three-minute stepping increased by 8.7%. CONCLUSIONS: Resistance training may be an effective intervention strategy for improving walking and functional ability in moderately disabled persons with MS.     

Persistent pain and uncomfortable sensations in persons with multiple sclerosis

The experience of pain has been documented in small studies of individuals with multiple sclerosis (MS). The present study examines the prevalence of persistent pain and uncomfortable sensations among participants in the large North American Research Committee on MS (NARCOMS) Patient Registry. Registrants (10,176) responded to a questionnaire on pain and 7579 reported experiencing some level of pain during the month prior to the survey. Among the respondents 49% reported mild to severe pain and 49% of those indicated severe pain. Increased pain intensity was positively associated with gender (more women), multiple pain sites (51% of the severe pain group reported four or more pain sites), and constancy of pain (44% among the group with severe pain). There was also a positive association with increased MS-related disability, relapsing-worsening type of MS, and depression. Respondents with severe pain made greater use of the healthcare system and of prescribed analgesics, but were less likely to be satisfied with their doctors' efforts to manage their pain. About one-third of the patients with moderate pain and 18% of those with severe pain reported no consultations for their pain. The effects of pain severity were fully evident in the respondents' daily life, their work, mood, recreational activities and enjoyment of life. Our results indicate that the high prevalence of MS-related severe pain, low satisfaction with management of intense pain, and the perceived interference with quality of life indicators necessitate greater attention by healthcare providers to the management of pain and uncomfortable sensations in the MS population.     

Attitudes toward physician-assisted suicide among persons with multiple sclerosis

This study was conducted to estimate the level of interest in assisted suicide among persons with multiple sclerosis (MS), the hypothetical conditions under which they would consider assisted suicide, and the factors associated with such interest. The sample of 511 members drawn from the Oregon and Michigan chapters of the National Multiple Sclerosis Society (NMSS) completed a mail questionnaire indicating whether they had ever considered assisted suicide, under what conditions they would consider it, and the correlates of considering assisted suicide. Close to one third of persons with MS in this study had thought about assisted suicide as an option for themselves. One quarter to one half would consider assisted suicide in five hypothetical circumstances, including experiencing unbearable pain, being unable to do things that made them happy, causing financial burden to caregivers or family members, or experiencing extreme emotional distress. Religiosity, social support, depressive symptomatology, MS symptoms, NMSS chapter, years since diagnosis, and gender were associated with some or all of the responses to the hypothetical conditions. The clinical and policy implications of these findings are discussed.     

Validity of six balance disorders scales in persons with multiple sclerosis

Purpose.?The aim of this study was to test concurrent and discriminant validity of several tests of static and dynamic balance in a sample of subjects suffering from MS.

Method.?A group of 51 patients were enrolled in the study. The following tests were administered: Berg Balance Scale (BBS), Timed Up and Go Test (TUG), Dynamic Gait Index (DGI), Hauser Deambulation Index (DI), Dizziness Handicap Inventory (DHI), and Activities-specific Balance Confidence (ABC). The scales used in this study were initially translated into Italian.

Results.?The sample of subjects reported a mean of 0.98 (1.8 SD) falls in the month prior to evaluation. The tests demonstrated good concurrent validity: Higher correlation coefficients among tests tapping the same aspect and lower correlation coefficients among tests tapping slightly different aspects. ABC and DHI tests discriminated better than the others between fallers and non-fallers and appeared the best predictors of fall status. BBS and DGI were not as efficient in discriminating between groups. Conversely all tests showed good difference validity in the prediction of patients who used an assistive device.

Conclusion.?BBS, TUG, DI, DGI, ABC, DHI have acceptable concurrent validity. The scales have poor performance in discriminating between faller and non-faller.     

Validity of six balance disorders scales in persons with multiple sclerosis

Purpose. The aim of this study was to test concurrent and discriminant validity of several tests of static and dynamic balance in a sample of subjects suffering from MS.

Method. A group of 51 patients were enrolled in the study. The following tests were administered: Berg Balance Scale (BBS), Timed Up and Go Test (TUG), Dynamic Gait Index (DGI), Hauser Deambulation Index (DI), Dizziness Handicap Inventory (DHI), and Activities-specific Balance Confidence (ABC). The scales used in this study were initially translated into Italian.

Results. The sample of subjects reported a mean of 0.98 (1.8 SD) falls in the month prior to evaluation. The tests demonstrated good concurrent validity: Higher correlation coefficients among tests tapping the same aspect and lower correlation coefficients among tests tapping slightly different aspects. ABC and DHI tests discriminated better than the others between fallers and non-fallers and appeared the best predictors of fall status. BBS and DGI were not as efficient in discriminating between groups. Conversely all tests showed good difference validity in the prediction of patients who used an assistive device.

Conclusion. BBS, TUG, DI, DGI, ABC, DHI have acceptable concurrent validity. The scales have poor performance in discriminating between faller and non-faller.     

Review of intervention studies on depression in persons with multiple sclerosis

Depression is prevalent among persons with multiple sclerosis (MS), an acquired neurologic disability that affects predominantly women. The purpose of this article is to review intervention studies on depression in persons with MS. An integrative review of eight intervention studies published from 2000 to 2005 has revealed that various interventions could potentially alleviate depression. Although no definite conclusions can be made from this review, there is reasonable evidence that cognitive behavioral approaches are beneficial in the treatment of depression and in helping people adjust to, and cope with, having MS.     

An overview of assistive technology for persons with multiple sclerosis

Multiple sclerosis (MS) is a progressive neurologic disease clinically characterized by episodes of focal disorder of the cranial nerves, spinal cord, and the brain. MS affects a significant number of young adults, and they most often face a future of progressive functional losses as more of their central nervous system and cranial nerves are affected. As the disease progresses, they have new impairments with accompanying limitations in activities, restrictions to their participation in life, and compromised quality of life. Assistive technology includes any item that is used to maintain or improve functional capabilities. The rehabilitation healthcare provider has many opportunities to intervene with assistive technologies to decrease activity limitations and participation restrictions. The purpose of this article is to (1) review the impairments and associated activity limitations and participations restrictions experienced by persons with MS, (2) provide an overview of high- and low-tech assistive technologies appropriate for persons with MS, (3) discuss funding opportunities for assistive technologies, (4) review current studies of assistive technology used for persons with MS and discuss future research directions, and (5) consider assistive technology as an intervention for disability prevention.     

Family caregiving of persons living with HIV/AIDS in Thailand: caregiver burden, an outcome measure

The present paper provides an initial picture of HIV/AIDS-affected families. It is evident that families play a major role of support for HIV/AIDS patients in Thai society. Caregiver burden is one of the patient-related outcomes, which is the most common outcome measure in caregiver research. The demands on the family caregivers of these patients are enormous and need to be addressed. The determinants that are associated with caregiver burden such as caregiver characteristics, patient characteristics and social stigma are important for nurses to minimize the burden of care so that appropriate interventions can be developed for persons with HIV/AIDS and family members who share the work of managing their care at home.