Multiple sclerosis continues to present a host of rehabilitation challenges, specifically the impact of secondary “hidden” conditions on quality of life, participation, and employment. To discuss the current state of rehabilitation research and direct future research endeavors, a state of the science conference was held in November 2010 in Alexandria, Virginia. The conference was presented by the University of Washington’s Multiple Sclerosis Rehabilitation Research and Training Center and focused on the current state of research into secondary conditions, outcomes measurement, employment, and the utility of psychotherapeutic interventions. This article discusses the details and recommendations of this conference.
Key points
- •
A person with multiple sclerosis (MS) frequently has more disability than is readily apparent to a casual observer. Part of the management of MS is to assess the patient for the presence of these symptoms and use management strategies.
- •
Persons with MS commonly (up to 90%) have a unique type of fatigue, which is part of the disease and which limits her/his ability to function.
- •
Combined with this, findings of depression are noted in approximately 3 times as many persons with MS as in the general population. This depression is also a manifestation of the disease.
- •
Other “hidden” symptoms of MS include cognitive impairment and pain.
- •
This article presents an update of means and strategies for management of these symptoms using rehabilitation techniques.
Introduction
Historically, the primary consequence of multiple sclerosis (MS) was considered to be limitations in mobility. In recent years, it has become increasingly clear that a much wider range of conditions are associated with MS, including changes in cognitive status, fatigue, sleep dysfunction, pain, and depression. Many of these conditions are not visible to casual observers. Although these conditions are intrinsic to MS pathology, they have traditionally been referred to as secondary conditions , a terminology that we will continue to use in this paper. These manifestations of the disease are induced by changes in the central nervous system and can have a profound impact on the perceived quality of life of people living with MS in areas such as social participation and employment.
In November 2010, the University of Washington Multiple Sclerosis Rehabilitation Research and Training Center (MSRRTC), funded by the National Institute on Disability and Rehabilitation Research (NIDRR), organized a consensus conference to discuss the current State of the Science (SOS) in the rehabilitation of MS. The goal of the SOS conference was to gather experts in the area of MS and to facilitate discussion on the current status and future directions of rehabilitation research. The content areas discussed included (1) secondary conditions adversely affecting people with MS: fatigue, pain, depression, and sleep dysfunction; (2) relevant measurements of secondary conditions and other important outcomes for studying MS; (3) the impact of MS on participation in employment and valued life activities; and (4) the utility of self-management as an intervention to mitigate the impact of these manifestations and improve quality of life. This article summarizes the invited presentations and work-group discussions updated with current references ( Box 1 ).
Dagmar Amtmann, PhD, Malachy Bishop, PhD, CRC, Charles Bombardier, PhD, Teresa Brady, PhD, Ruth Brannon, MSPH, MA, Jack Burks, MD, Karon Cook, PhD, Dawn Ehde, PhD, Marcia Finlayson, PhD, OTR/L, Fred Foley, PhD, Robert Fraser, PhD, Allen Heinemann, PhD, ABPP (RP), Laura Henderson, Kurt Johnson, PhD, David Keer, Jiseon Kim, PhD, George Kraft, MD, MS, Nicholas LaRocca, PhD, Nancy Law, PhD, Michael Marge, Ed.D, Deborah Miller, PhD, Nesanet Mitiku, MD, PhD, Ralph Nitkin, PhD, Kenneth Pakenham, PhD, Phil Rumrill, PhD, CRC, Alan Segaloff, CPA, Arthur Sherwood, PhD, Alexa Stuifbergen, PhD, RN, FAAN, Aaron Turner, PhD, Aimee Verrall, MPH, Jamie Wazenkewitz, MSW, MPH.
Introduction
Historically, the primary consequence of multiple sclerosis (MS) was considered to be limitations in mobility. In recent years, it has become increasingly clear that a much wider range of conditions are associated with MS, including changes in cognitive status, fatigue, sleep dysfunction, pain, and depression. Many of these conditions are not visible to casual observers. Although these conditions are intrinsic to MS pathology, they have traditionally been referred to as secondary conditions , a terminology that we will continue to use in this paper. These manifestations of the disease are induced by changes in the central nervous system and can have a profound impact on the perceived quality of life of people living with MS in areas such as social participation and employment.
In November 2010, the University of Washington Multiple Sclerosis Rehabilitation Research and Training Center (MSRRTC), funded by the National Institute on Disability and Rehabilitation Research (NIDRR), organized a consensus conference to discuss the current State of the Science (SOS) in the rehabilitation of MS. The goal of the SOS conference was to gather experts in the area of MS and to facilitate discussion on the current status and future directions of rehabilitation research. The content areas discussed included (1) secondary conditions adversely affecting people with MS: fatigue, pain, depression, and sleep dysfunction; (2) relevant measurements of secondary conditions and other important outcomes for studying MS; (3) the impact of MS on participation in employment and valued life activities; and (4) the utility of self-management as an intervention to mitigate the impact of these manifestations and improve quality of life. This article summarizes the invited presentations and work-group discussions updated with current references ( Box 1 ).
Dagmar Amtmann, PhD, Malachy Bishop, PhD, CRC, Charles Bombardier, PhD, Teresa Brady, PhD, Ruth Brannon, MSPH, MA, Jack Burks, MD, Karon Cook, PhD, Dawn Ehde, PhD, Marcia Finlayson, PhD, OTR/L, Fred Foley, PhD, Robert Fraser, PhD, Allen Heinemann, PhD, ABPP (RP), Laura Henderson, Kurt Johnson, PhD, David Keer, Jiseon Kim, PhD, George Kraft, MD, MS, Nicholas LaRocca, PhD, Nancy Law, PhD, Michael Marge, Ed.D, Deborah Miller, PhD, Nesanet Mitiku, MD, PhD, Ralph Nitkin, PhD, Kenneth Pakenham, PhD, Phil Rumrill, PhD, CRC, Alan Segaloff, CPA, Arthur Sherwood, PhD, Alexa Stuifbergen, PhD, RN, FAAN, Aaron Turner, PhD, Aimee Verrall, MPH, Jamie Wazenkewitz, MSW, MPH.
Fatigue
Until the first publication of the high prevalence of fatigue in persons with MS in 1984, there was no mention in the MS literature of fatigue as a symptom of this disease. Since the last SOS Conference in 2006, the number of fatigue management interventions has increased and ranged from a teleconference-delivered program, a 6-week community-based energy conservation intervention, to a telephone-based exercise program. The existing evidence is based on small-sized or modest-sized randomized controlled trials or natural history studies and has focused on one-dimensional outcomes such as change in fatigue levels without looking at these outcomes within the larger context of changes in participation and/or well-being.
Pain
Chronic pain affects as many as 20% of people with MS at onset and 50% at any given point; about 25% of people who report pain rate it as severe. For people with MS, pain is multidimensional and often varies by location, mechanism, and characteristics. Too often the first method of treatment is medication, which is not always the correct course of action. In MS, pain is most accurately scribed as biopsychosocial, which encompasses biological, psychological (thoughts, emotions, behaviors), and social factors that interact and play a significant role in the daily life of a person with MS. Pain catastrophizing or excessively negative or unrealistic thoughts about pain or ability to cope with it is often seen in people with MS. Cognitive behavioral therapy (CBT) has shown promise in clinical trials to mitigate pain and pain interference in people with MS. CBT typically focuses on relaxation training or behavioral strategies such as adaptive coping, pacing, and activation. Self-hypnosis has also been an area of research as a method of pain management. An emerging focus of research is on the efficacy of combining CBT with self-hypnosis training to manage pain in MS.
Depression
Major depression is difficult to diagnose in persons with MS because symptoms associated with depression (fatigue, sleep disturbance, problems with concentration) overlap with symptoms inherent to MS. Persons with MS are more at risk for depression when they are younger, earn less income, are less educated, are unemployed, or have advanced disease. Depression compounds the disability related to MS and is associated with poorer attention, difficulty concentrating, diminished quality of life, poorer health, lower adherence to treatments, and increased risk of suicide. Treatment is usually in the form of drugs or psychotherapy but few treatment trials have been published in persons with MS. Antidepressants may be modestly effective, and greater improvement is associated when compliance at a therapeutic level is maintained for at least 12 weeks. There is good evidence that CBT is an effective treatment of depression in people with MS. However, access to adequately trained clinicians may be limited. One recent study indicates that a telephone-based intervention to increase physical activity leads to significantly reduced depression. Physical activity may improve depression via several pathways, including an increase in serotonin production, distraction from negative emotions, or dampening of the stress response.
Sleep
Sleep disorders have a high prevalence (25%–54%) in persons with MS, with restless leg syndrome being 2 times more prevalent in this group than in the general population. Research that has been conducted in the area of sleep includes a community survey, where 46.8% of people with MS reported moderate to severe sleep disturbance problems. Sleep disturbances are often interrelated with other secondary conditions, such as depression, pain, and fatigue but the relationship between these is not well understood. Sleep disturbances encountered by persons with MS include insomnia, circadian rhythm disorders, sleep disturbances associated with medications, nocturnal movement disorders, respiratory problems during sleep, narcolepsy, and rapid eye movement sleep behavior disorder. Sleep disturbances are more common in MS patients than in the general population and limit these patients’ quality of life. Therefore, the authors believe that these disturbances should be a focal point in any multidisciplinary treatment of MS. More research is needed to investigate the prevalence of specific sleep disorders in persons with MS, methods to improve their recognition, as well as the development of more effective treatments.
Cognitive problems
About 45% to 65% of persons with MS experience problems with cognition. As MS progresses over time, brain atrophy can result in cognitive impairment. Improved magnetic resonance imaging and diffusion tensor imaging techniques have led to earlier and more specific recognition of the structural substrate associated with cognitive impairment, even in some patients with early disease including those with clinically isolated syndrome. However, higher levels of cognitive deficits may be seen in patients with progressive forms of MS.
There are 4 main areas of cognitive difficulties observed in people with MS: (1) memory, (2) spatial ability, (3) cognitive efficiency or processing speed, and (4) executive function. However, there is wide variability in the cognitive problems experienced by persons with MS. Cognitive difficulties result in decreased participation in daily life activities, diminished quality of life, and unemployment. Currently, there is little in the way of very successful treatments, therapies, or rehabilitation strategies to manage cognitive problems in people with MS. Clinical evidence and expert opinion suggest that the most that can be offered to help such patients consists of using neuropsychological testing to determine specific cognitive deficits and strengths and training the patient to use the retained strengths to substitute for deficits. Also, promising research is emerging investigating the benefit of exercise training and self-management strategies.
Measuring secondary conditions and other outcomes
Outcomes measurement in MS requires continued monitoring of numerous symptoms and quality of life indicators. Brief, easy to administer, and precise instruments are necessary for research and assessing the benefits of treatments in clinical practice. In recognition of the importance of psychometrically sound instruments, the National Institutes of Health (NIH) funded new initiatives that should greatly improve clinical measurements in MS. There are 2 national initiatives that use item pools for the development and administration of patient-reported outcomes, Patient-Reported Outcomes Measurement Information System (PROMIS) and NeuroQol, and one national initiative that uses primarily performance-based measurements, the NIH Toolbox. Table 1 provides a link to these initiatives’ websites where more information about the measures can be found; these measures themselves can be downloaded free of charge.
| Initiative | Website |
|---|---|
| PROMIS a | http://www.nihpromis.org |
| Neuro-QoL | http://www.neuroqol.org/default.aspx |
| NIH Toolbox | http://www.nihtoolbox.org/default.aspx |
Related posts:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
