Kurt L. Johnson

Prevalence of sleep problems in individuals with multiple sclerosis.

Background Sleep disturbance in multiple sclerosis has received little research attention despite the potential influence it may have on disease impact. Objective To estimate the prevalence of sleep disorders in a large community sample of individuals with multiple sclerosis. Methods A cross-sectional self-report survey of 1063 persons with multiple sclerosis. Sleep was assessed using the Womens Health Initiative Insomnia Rating Scale and Medical Outcomes Study Sleep measure. Results The prevalence of sleep problems in multiple sclerosis is significantly higher than in the general population or other chronic diseases and may affect women with multiple sclerosis more than men. Conclusion Sleep disturbance should routinely be evaluated in patients with multiple sclerosis and new interventions developed.

Comparing CESD-10, PHQ-9, and PROMIS depression instruments in individuals with multiple sclerosis.

PURPOSE This study evaluated psychometric properties of the Patient Health Questionnaire-9 (PHQ-9), the Center for Epidemiological Studies Depression Scale-10 (CESD-10), and the 8-item PROMIS Depression Short Form (PROMIS-D-8; 8b short form) in a sample of individuals living with multiple sclerosis (MS). RESEARCH METHOD Data were collected by a self-reported mailed survey of a community sample of people living with MS (n = 455). Factor structure, interitem reliability, convergent/discriminant validity and assignment to categories of depression severity were examined. RESULTS A 1-factor, confirmatory factor analytic model had adequate fit for all instruments. Scores on the depression scales were more highly correlated with one another than with scores on measures of pain, sleep disturbance, and fatigue. The CESD-10 categorized about 37% of participants as having significant depressive symptoms. At least moderate depression was indicated for 24% of participants by PHQ-9. PROMIS-D-8 identified 19% of participants as having at least moderate depressive symptoms and about 7% having at least moderately severe depression. None of the examined scales had ceiling effects, but the PROMIS-D-8 had a floor effect. CONCLUSIONS Overall, scores on all 3 scales demonstrated essential unidimensionality and had acceptable interitem reliability and convergent/discriminant validity. Researchers and clinicians can choose any of these scales to measure depressive symptoms in individuals living with MS. The PHQ-9 offers validated cutoff scores for diagnosing clinical depression. The PROMIS-D-8 measure minimizes the impact of somatic features on the assessment of depression and allows for flexible administration, including Computerize Adaptive Testing (CAT). The CESD-10 measures 2 aspects of depression, depressed mood and lack of positive affect, while still providing an interpretable total score.

Getting the work done: a qualitative study of individuals with multiple sclerosis

The Problem : Work can be defined as an activity performed to accomplish something in the presence of obstacles that may make accomplishing the goal difficult. For individuals with MS, work is not only limited by physical impairments but also by factors such as fatigue and cognitive changes Purpose : The aim of this study is to examine the experiences of individuals with mild to moderate MS as they carry out everyday work activities both inside and outside the home. Method : Eleven women and three men were recruited from the community to participate in a series of semi-structured interviews. Using qualitative research methodology that examined the experiences of the participants, two major themes and seven subthemes emerged. Results : The first theme, Defining the work, included Priorities : seeing whats important; Plans : learning about resources and requirements; and Perspectives : fixing it yourself. The second theme, Changing how things get done, includes Precipitating factors; Awareness; Constructing the strategies; and Evaluating the strategies. Conclusions : Individuals with MS develop strategies and utilize resources in order to get the work done. Comparisons are made between existing intervention theories or programmes and the experiences described by participants in this study.

Survey of cannabis use in patients with amyotrophic lateral sclerosis

Cannabis (marijuana) has been proposed as treatment for a widening spectrum of medical conditions and has many properties that may be applicable to the management of amyotrophic lateral sclerosis (ALS). This study is the first, anonymous survey of persons with ALS regarding the use of cannabis. There were 131 respondents, 13 of whom reported using cannabis in the last 12 months. Although the small number of people with ALS that reported using cannabis limits the interpretation of the survey findings, the results indicate that cannabis may be moderately effective at reducing symptoms of appetite loss, depression, pain, spasticity, and drooling. Cannabis was reported ineffective in reducing difficulties with speech and swallowing, and sexual dysfunction. The longest relief was reported for depression (approximately two to three hours).

Assistive Technology Use Among Adolescents and Young Adults With Spina Bifida

OBJECTIVES We sought to determine the use of assistive technology among a population of individuals with spina bifida. METHODS We performed a descriptive analysis of individuals aged 13 to 27 years diagnosed with myelomeningocele (n=348) using data obtained from an existing database at Childrens Hospital and Regional Medical Center, Seattle, Washington. We summarized disease characteristics, utilization of assistive technology, community and self-care independence, and other variables. RESULTS Eighty-four percent of the respondents lived with at least 1 of their natural parents. Fifty-seven percent used wheelchairs, 35% used braces, and 23% used walking aids. Independent self-care was a common skill, but 72% reported limited participation in structured activities. Half were aged 18 years or older; of those, only 50% had completed high school and 71% were unemployed. Those aged younger than 18 years were all still in school (100%). CONCLUSIONS Adolescents and young adults with spina bifida rely on assistive technology and specialized care routines to maintain their health. Assistive technology use for mobility is common; little is known about secondary complications associated with use of these technologies or the use of assistive technology to address learning disabilities and other societal barriers. Underutilization of assistive technology could delay successful transitions to independent living and community participation.

Use of cognitive aids and other assistive technology by individuals with multiple sclerosis

Purpose. To investigate the use of assistive technology (AT), unmet needs for AT, and examine correlates of use of memory aids and cognitive strategies among individuals with multiple sclerosis (MS). Method. A cross-sectional study of 1,063 community dwelling adults with MS in Washington State. A self-report survey assessed use of AT as well as depression, fatigue, mobility, and other demographic and disease related variables. Results. Some 70% of respondents reported using memory strategies and 50.7% reported using electronic memory aids. The strongest correlate of use of electronic memory aids was endorsement of difficulties thinking (OR: 2.09, p < 0.001) though younger age, higher education, and report of higher fatigue were also significant. Fatigue (OR: 1.27, p < 0.001) and depression (OR: 0.89, p < 0.001) were highly associated with use of memory strategies. Subjects who were older, unemployed, more depressed, and have more mobility disability were less likely to use memory strategies. Conculsions. Use of AT for memory is widespread and further research should be conducted on efficacy of AT. Many individuals who might be presumed to need AT for memory most (older, less educated, more disability) are least likely to report use. Healthcare providers are urged to ask about memory AT and make appropriate referrals.

Understanding employers' hiring intention in relation to qualified workers with disabilities

The present study focused on the intentions of employers to reach out toward qualified workers with disabilities as part of their hiring pool recruitment activity. An employer survey was developed in accord with the theory of planned behavior (Ajzen, 2005). According to the tenets of the model, it was hypothesized that through multiple regression, it would be demonstrated that employer attitudes, subjective norms, and perceived control variables predict the intention to engage in hiring behavior toward qualified workers with disabilities in the next six months. Overall, the model accounted for 67% of the variance in the survey of Northwest employers (n = 92) in relation to hiring intentions with normative influences (CEOs, CFOs, etc.) accounting for the greater proportion of the variance, beta coefficient 0.48, p < 0.01. Attitudes toward the hiring behavior and perceived control had lesser beta weights, 0.24 and 0.22, p < 0.05. Implications of these findings and those from the focus groups used to develop the survey are reviewed in detail relative to more effective vocational rehabilitation marketing efforts.

Beyond fatigue: Assessing variables associated with sleep problems and use of sleep medications in multiple sclerosis

Background: Recent research indicates that sleep disturbances are common in persons with multiple sclerosis (MS), though research to date has primarily focused on the relationship between fatigue and sleep. In order to improve treatment of sleep disorders in MS, a better understanding of other factors that contribute to MS sleep disturbance and use of sleep medications in this population is needed. Methods: Individuals with MS (N = 473) involved in an ongoing self-report survey study were asked to report on use of over-the-counter and prescription sleep medications. Participants completed the Medical Outcomes Study Sleep (MOSS) scale and other common self-report symptom measures. Multiple regression was used to evaluate factors associated with sleep problems and descriptive statistics were generated to examine use of sleep medications. Results: The mean score on the MOSS scale was 35.9 (standard deviation, 20.2) and 46.8% of the sample had moderate or severe sleep problems. The majority of participants did not use over-the-counter (78%) or prescription (70%) sleep medications. In a regression model variables statistically significantly associated with sleep problems included depression, nighttime leg cramps, younger age, pain, female sex, fatigue, shorter duration of MS, and nocturia. The model explained 45% of the variance in sleep problems. Of the variance explained, depression accounted for the majority of variance in sleep problems (33%), with other variables explaining significantly less variance. Conclusions: Regression results indicate that fatigue may play a minor role in sleep disturbance in MS and that clinicians should consider the interrelationship between depression and sleep problems when treating either symptom in this population. More research is needed to explore the possibility of under-treatment of sleep disorders in MS and examine the potential effectiveness of nonpharmaceutical treatment options.

Antidepressant use in multiple sclerosis: epidemiologic study of a large community sample

Depressive symptoms and disorders among individuals with multiple sclerosis (MS) are more common when compared to other chronic illnesses and the general population, but relatively little is known about the use of antidepressant medication in this population. In this cross-sectional study of 542 community-dwelling adults with MS, we examined the prevalence of antidepressant use and employed multivariate logistic regression modeling to identify factors significantly associated with antidepressant use. Thirty-five percent of the sample reported currently using at least one antidepressant medication. Gender, marital status, insurance status, fatigue, and use of disease modifying therapies were all significantly associated with antidepressant use. Just over half of the sample endorsed a clinically significant level of depressive symptoms, and the majority of this group was not currently taking an antidepressant. Conversely, 41% of those with depressive symptoms reported taking at least one antidepressant medication. More research is needed to better understand why people with MS and depressive symptoms use or do not use antidepressant medications and to further explore the possibility of an under-treatment of depressive disorder in this population. Rigorous studies testing the feasibility, acceptability, and efficacy of currently available therapies for depression in the MS population should also be conducted. Multiple Sclerosis 2007; 13: 1046—1053. http://msj.sagepub.com

The PROMIS initiative: Involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research

To fully capture the impact of a disease or condition on the lives of individuals, patient-reported outcomes are considered a necessary component of health measurement in rehabilitation. This article provides an overview of the involvement of rehabilitation stakeholders in the development of sound measurement tools for the Patient-Reported Outcomes Measurement Information System (PROMIS), a National Institutes of Health-funded initiative. PROMIS is a multisite study that included many different populations. We focus on the involvement of people with several chronic conditions, including multiple sclerosis, spinal cord injury, and arthritis, in the development of PROMIS measures. We describe both qualitative and quantitative methods used, including expert panels, focus groups, cognitive interviews, and item response theory modeling, which resulted in enhanced utility of PROMIS measures in rehabilitation. Measures include a set of global health items and 12 item banks representing 6 domains. Scores are reported in the T score metric (mean ± SD, 50 ± 10) and centered on mean values from the U.S. general population. The PROMIS item banks measure quality of life and symptoms of people with chronic conditions and have the potential to enhance research and clinical practice by facilitating comparisons of scores across domains and populations.