Multiple Sclerosis Current Status and Strategies for the Future (2001) / Chapter Skim
Currently Skimming:
4 Disease Management and Measurement
4 Disease Management and Measurement
Pages 177-240
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From page 177... ...
These tools not only provide for objective assessment of the needs of people with MS, they are also an essential element of measuring the effectiveness of any sort of therapeutic intervention be it a rehabilitation process, a self-help program, or a disease-modifying therapy. Quality-of-life measures can also reveal aspects of the disease process that are not readily captured in standard clinical measures and might reveal insights into the underlying disease 177
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From page 178... ...
A growing body of research describes the lives of average people living in the community with MS. Many of these studies involve surveys, the application of various psychometric instruments (functional status measures, quality-of-life indices, and other instruments targeting specific topics)
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From page 179... ...
He didn't say, "Do X." He didn't say, "Come back in six weeks." He just left. Period.
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From page 180... ...
Although the scans might confirm a diagnosis of MS, they still provide little information about the prognosis for impairment or disability. Another is the decision whether to start any of the disease-modifying therapies.
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From page 181... ...
This finding was replicated across all the measures included in the study, including self-rated quality of marital, family, and friend relationships; objective measures of emotional functioning, thoughts of suicide, and self-esteem; and direct self-assessments of current coping with the disease.48 Another study involving 629 women with MS found that compared to normative controls, they displayed significantly better interpersonal relationships and stress management, although they had significantly lower physical activity and spiritual growth compared to normative controls.~99 A study of 64 MS patients in Finland found that although they reported feeling physically limited and insecure, many also noted that having the disease helped clarify personal values and enhanced personal growth.~5 People vary widely in their coping styles and in their perceptions of how much control they have over what happens to them. Coping is defined by Lazarus and Folkman as "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person."~4 Styles of coping with stress are often
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From page 182... ...
37 99 i72 i73 203 204 Remarkably few investigators have inquired into the mechanisms that underlie success and failure in adapting to MS.2 One prospective study that followed the adaptations and coping strategies of 27 patients found that escape avoidance coping strategies predicted future depression, but this was not a robust finding because the investigators reported that the correlation was not apparent in a follow-up study of the same patients.2 Another study of 433 people with MS did not find a significant association between coping strategies and emotional wellbeing.23i The same study noted that study subjects' coping styles depended on their level of uncertainty about their symptoms, treatment, relationships with caregivers, or future plans. Subjects used more emotion-focused coping when they were more uncertain and problem-focused coping when they were less so.
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From page 183... ...
Little research has examined changes in people's attitudes over time or the factors associated with such shifts. These changes could alter perceptions of the value of medical therapy, the role of health care professionals, and interventions to address functional impairments.
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From page 184... ...
Toombs notes, "Negative societal attitudes towards illness and disability not only diminish self-esteem, making it hard to accommodate loss of bodily function, but such attitudes cause concrete hardships in terms of the disruption of personal relationships, loss of employment opportunities, inability to obtain health insurance, and so forth." 2~4 These self-perceptions might vary according to the cause of disability. In a study of 25 wheelchair users, Avillion~ found much lower selfesteem among people disabled by MS than by spinal cord injury.
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From page 185... ...
Even independently of a causal link between stress and disease progression, stress management would seem to be an obvious area in which interventions could improve quality-of-life for people with MS, as well as their caregivers. Family and Social Relationships As for most people, relationships with family and friends are central to the lives of people with MS.
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From page 186... ...
I felt like I was about to go stand on a corner and scream. It's not because I don't love him, or not because I resent what I am doing, it's just that I need some space." Another study of 146 people with MS and their caregiving spouses or partners revealed significant differences in coping styles, depending on the caregiver's gender and health, and the level of dependency of their partner with MS.72 More knowledge about the coping strategies and needs of caregivers can be used to provide information and counseling to help families cope more effectively with the demands of MS.
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From page 187... ...
Identifying cost-effective measures to relieve caregiver burden would be of mutual benefit to caregivers, MS patients, and health care providers. Relationships with Children.
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From page 188... ...
People with MS, like others with disabilities, face negative societal attitudes that legislation cannot eradicate. Murrayi39 observed, "The stigma of a disabling disease becomes a disturbing negative influence on MS patients as they become recognizable in the community.
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From page 189... ...
. An overarching view of the state of research in this area suggests the following: Studies are generally small and do not distinguish among different MS disease states, with authors noting that their results cannot be applied to the full spectrum of people with MS.
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From page 190... ...
A series of forums could provide the needed perspective to defining these strategies and should include the following constituencies: patients and their families; health care providers; allied heath professionals, such as physical therapists, occupational therapists, and social workers; health services researchers, including survey scientists and clinical epidemiologists; social scientists, gists; and representatives of organizations of patients with other disorders that present some of the same challenges faced by people with MS 11 ncluding sociologists, anthropologists, and psycholoEmployment As a disabling disease of young adulthood, MS inevitably disrupts careers.~59 i95 A 1992 survey of people with MS in the United States found that roughly 40 percent were employed.24 Although the unemployment rate for people with MS is clearly high (even at the time of diagnosis) , it is important to consider unemployment rates relative to the base rate for the general population.
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From page 191... ...
A number of factors are correlated with unemployment in MS. Women; people with severe physical impairment, visual impairments, ambulatory problems, or cognitive dysfunction; and people in lower socioeconomic strata are less likely to be employed than other people with MS.~59 i70 In general, employment rates are lower for people in wheelchairs or for those with steadily progressive disease, both of which apply to people with MS.48 Recent research has focused on barriers to employment and factors that might allow people to continue working.
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From page 192... ...
Many people with MS who lose or change their jobs to accommodate their condition suffer associated financial losses:24 70 percent of the low-income families, 43 percent of the medium-income families, and 24 percent of the highincome families in one survey reported having trouble meeting health care needs, basic living needs, or both. Rodriguez and colleagues reported that 77 percent of the patients responding to their survey maintained their usual financial standard without external support.~64 Again, these data are from an affluent community, which might account for the relatively large percentage of people who were able to accommodate the financial burden of the disease.
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From page 193... ...
Examining the trajectory of functioning and quality of life over time defines the patterns of progression and expands understanding of the clinical epidemiology of MS. Finally, functional status and quality of life are critical end points in measuring the effectiveness of therapy, for both clinical trials and routine patient care.
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From page 194... ...
For example, in clinical trials of diseasemodifying drugs for MS, different investigators have used different outcome measures in different populations. Direct comparisons of the trials are thus intrinsically imprecise, with the result that comparisons of the drugs are based more on expert opinions than on evidence.~69 Functional status and quality of life are concepts that can be viewed in many different ways, and no single universally valid measure is likely to emerge.~3 i5i Nevertheless, standardized assessment methods that are multidimensional, quantitative, and include cognition evaluation are needed, particularly for the evaluation of patients receiving therapy.~69 With these goals in mind, the National Multiple Sclerosis Society's Clinical Outcomes Assessment Task Force generated a list of the ideal characteristics of a clinical outcomes measure (Box 4.2~.56 Quality-of-Life Measurement The modern outcomes movement, which developed in the 1980s, established the principle that the consequences of a medical intervention for its recipient should be a major criterion in determining its value.
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From page 195... ...
This may be particularly true of young disabled men and women, since one-quarter of this group of respondents describe their health as "poor" yet value it as "good." Conversely, young people who describe themselves as "healthy" can be reluctant to value their health near the top because they have high expectations about what being in the "best imaginable health state" involves.45 Health care professionals often see patients only in the setting of an
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From page 196... ...
Each article used anywhere from 1 to 19 instruments, with a mean of 3 per article.64 Some are generic to the extent that they assess health concepts that represent basic human values (Box 4.3~;223 others are designed to capture the impact of specific diseases (Box 4.4~. The SF-36, a 36-item measure developed in the Medical Outcomes Study and comprised of eight dimensions, is the most widely used quality-of-life scale (Box 4.3~.~92~93 However, four of its eight dimensions cover functional limitations, so it can also be considered a generic measure of functional status.
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From page 197... ...
The Medical Outcomes Study general health survey (MOS-20) was largely designed and tested among ambulatory patients and is biased against documenting a decline in the
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From page 199... ...
Some studies find that although patients and proxies provide generally comparable assessments of overall health and physical functional status, proxies report significantly lower emotional health, social activity, and satisfaction than do patients. Others find that proxies rate both physical and psychosocial dimensions of functional status as more impaired than do patients themselves.2i i22 Physicians also frequently underestimated patients' functioning.~67 Functional Status Functional status is a component health status and refers to the ability to perform activities of daily living.
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From page 200... ...
. Most comprehensive functional status measures also encompass cognitive abilities (level of alertness, orientation, long- and short-term memory, capacity for learning and computation)
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From page 202... ...
202 MULTIPLE SCLEROSIS pression) , and social activities (for example, visiting friends, sexual relationships)
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From page 203... ...
Measuring functional status raises several issues. First, as with other measures of health status, many functional status measures are generic in that they are independent of diagnoses or the cause of impairment.
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From page 204... ...
Finally, functional status measures and disability measures have been criticized as too narrow to be used as outcomes measures by themselves because they do not address the impact of the disease on the patient. The effects of MS on relationships, family, employment, and other aspects of life are not covered by functional status measures but fall under the concept of health-related quality of life.208 With respect to MS, no measure of disability has been shown to be superior to all others.
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From page 205... ...
The EDSS generally correlates with the physical function domains of the SF-36, but not with other aspects such as role functioning or mental health. i44 The measurement of functional status and impairment is central to all aspects of clinical research on MS, and the development and validation of acceptable measures must remain a priority for MS research (see Recommendation 12~.2~7 ASSISTANCE Assistive Technology Assistive technology refers to any technology that helps support the individual's independence by enhancing or assisting performance of the activities of daily living.
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From page 206... ...
ABLEDATA, sponsored by the National Institute on Disability and Rehabilitation Research, describes more than 25,000 assistive technology products, including the price and company information for each. REHABDATA, an online bibliography of publications, journals, and government reports on rehabilitation, provides information on assistive technology and is run by the National Rehabilitation Information Center and funded by the National Institute on Disability and Rehabilitation Research.~87 Several web sites provide recent information on research and events relevant to MS.
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From page 207... ...
High-technology devices such as electrically powered feeders, electrically powered page-turners, or environmental control units are also available. Permanent or temporary home environment modifications, such as lowering kitchen counters and cabinets to wheelchair height, can be helpful.
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From page 208... ...
These devices can increase social interaction and, along with portable home emergency call systems, serve as important safety devices that can be used to call for help when an accident has occurred in the home. Internet.
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From page 209... ...
Input from MS patients in the design of new technologies is crucial. Development of effective educational methods for demonstrating the application and operation of assistive technology to health care professionals and people with MS would increase the use of available technologies and increase
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From page 210... ...
The optimal time for the introduction of assistive technology during the rehabilitation or therapy process should be studied. Strategies to reduce the social stigma associated with disability should be examined.
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From page 211... ...
Patients will be evaluated at baseline and at three-month intervals for one year, with a range of outcome measures from impairment to self-efficacy.
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From page 212... ...
This essential component is probably also the most challenging. It requires the use of outcome measures that are scientifically sound (reliable, valid, and responsive to changes in a patient's condition)
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From page 213... ...
Finally, there is no consensus as to what the most appropriate outcome measures are, and until recently, limited and often-inappropriate tools have been used inconsistently. Despite these obstacles, a number of recent studies have demonstrated that it is indeed possible to achieve some degree of evaluation for rehabilitation interventions, although many more studies are required.
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From page 214... ...
The other study compared the outcomes of 67 patients who received either inpatient services (in the same rehabilitation hospital as in the previous study) or outpatient treatment provided by visiting nurse services.58 Three months after discharge, the inpatient group showed less disability, as measured by the Incapacity Status Scale (ISS)
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From page 215... ...
A randomized control trial of inpatient physical therapy (6.5 hours over two weeks) was carried out on 45 patients.62 Outcome measures used in the study included the Rivermead Mobility Index, the Barthel ADL Index, and a visual analogue scale of "mobility-related distress." The treatment did not show significant benefit on either mobility or ability to perform activities of daily living but did significantly reduce mobility-related distress.
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From page 216... ...
The impact of aerobic exercise was evaluated in a population of 46 patients with relatively mild MS (EDSS of 6 or less) : 21 of the patients were randomly assigned to a 15-week exercise program, while 25 had no exercise over that period.~54 The wide range of outcome measures included aerobic capacity, isometric strength, the Fatigue Severity Scales (FSS)
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From page 217... ...
However, while the study measured the impact of diagnostic testing, it did not provide specific information about how the diagnosis can be imparted most beneficially to patients and their families. In 1993, the British Society of Rehabilitation Medicine with the support of the MS Society of Great Britain and Northern Ireland published guidelines for imparting the diagnosis (Box 4.8~.57 These guidelines represent the consensus of a committee of people with MS, their families, health care professionals, and service providers.
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From page 218... ...
At the least, the background of unpredictability of the disease course should be considered as a potential factor in determining optimal forms of communication about health-related information. Patients do not generally want to learn about demyelination when they are diagnosed.
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From page 219... ...
Only by understanding the specific hurdles that people face can initiatives be designed for improving the lives of people living today with MS. Parameters of Effective Communication Strategies The desire of people with MS for more information is clearly a recurring theme, but there are many questions to answer before this general need is translated into effective communication strategies.
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From page 220... ...
(As discussed in the section on assistive technology, information on wheelchair use is sorely needed, but rarely easy to obtain.) Each of these difficulties brings with it new needs for information, and there has been almost no research to identify optimal modes of fulfilling the diverse information needs of people with MS.
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From page 221... ...
A 1998 survey reported that 42 percent of people with MS surveyed in the United States have Internet access, suggesting that their access is somewhat greater than that of the general population.~65 HEALTH CARE Access to Health Care Costs and payment policies present major barriers to obtaining mobilityrelated services. Health insurers typically restrict the numbers of physical therapy
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From page 222... ...
Despite its older and disabled population, Medicare, for example, limits coverage of interventions targeting functional status, and payment for rehabilitation services depends on continued functional improvements.23 Many of these services have not yet garnered a rigorous "evidence base," which has seemingly become essential for insurance coverage. Insurers often deny coverage of mobility aids.
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From page 223... ...
The literature outside MS suggests that patients who participate more actively in decision making about their care may do better.93~95 i66 In one study, patients who assumed control of conversations (for example, asking more questions, attempting to direct the flow of the discussion and their doctors' behavior) during a baseline office visit reported fewer days lost from work, fewer health problems, lower functional limitations due to health, and improved health status at a follow-up visit.
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From page 224... ...
Numerous studies have shown that physical activity in cancer patients enhances well-being in terms of physical and functional status, as well as psychological and emotional status (reviewed in 1999 by Courneya and Friedenreich34~. Aerobic exercise training improves fitness, increases feelings of wellbeing, and reduces depression and anxiety in people with MS.~55 Some aspects of impaired muscle function observed in MS are similar to those seen in healthy people after prolonged periods of inactivity, and Reconditioning due to reduced physical activity likely contributes to the loss of muscle function in MS.97 i43
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From page 225... ...
An assessment of exercise history, including activities of daily living, and a fitness evaluation should be obtained prior to the initiation of an exercise program. Exercises that increase flexibility, strength, coordination, and balance are particularly helpful.
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From page 226... ...
The term "complementary medicine" is preferred by some people, because it indicates that alternative therapies can be integrated with conventional therapies. For simplicity, the single term "alternative medicine" is used here to include all aspects of non-traditional medicine.
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From page 227... ...
Twenty-five to 49 year-olds are more likely to use alternative medicine than people who are younger or older, and African-Americans are less likely than other ethnic groups to use alternative medicine.47 Different surveys report different age groups as those who use alternative therapies most extensively.46 i34 This inconsistency might reflect international differences, population differences in health status, or differences in the way alternative therapies were described in survey questions. Use of alternative therapies is not only widespread among healthy people; once people are diagnosed with a serious illness, their use is likely to increase.~36 i63 i74 2~8 For example, in a study of 480 women with newly diagnosed breast cancer, 28 percent of them began to use alternative therapies.20 On the bright side, and unlike the general population, most of these women informed their doctors.
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From page 228... ...
There are endless varieties of alternative therapies, and it is important to know which of these are used most often and most heavily by MS patients. The use of alternative therapies should be taken into account in all aspects of treatment and assessment from prescription of symptomatic treatments, to research on health status and quality of life, to identifying the most pressing health information needs of people with MS.
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From page 229... ...
1998. Why patients use alternative medicine: results of a national study.
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From page 230... ...
1976. The sickness impact profile: validation of a health status measure.
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From page 231... ...
1996. An exploratory study of the relationship between alternative therapies, functional status, and symptom severity among people with multiple sclerosis.
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From page 232... ...
: an integrated approach to MS clinical outcome assessment. National MS Society Clinical Outcomes Assessment Task Force.
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From page 233... ...
1999. Generic health status measures are unsuitable for measuring health status in severely disabled people.
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From page 234... ...
1992. Advances in health status assessment: Fostering the application of health status measures in clinical settings: Proceedings of a conference.
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From page 235... ...
1996. Evaluation of disability in multiple sclerosis patients: A comparative study of the functional independence measure, the extended barthel index and the expanded disability status scale.
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1989. Health status assessment for elderly patients.
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From page 237... ...
1981. Advances in the measurement of functional status: construction of aggregate indexes.
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From page 238... ...
1999. Measuring change in disability after inpatient rehabilitation: comparison of the responsiveness of the Barthel index and the Functional Independence Measure.
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From page 239... ...
1997. [The use of alternative medicine by multiple sclerosis patients patient characteristics and patterns of use]
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From page 240... ...
Assistive Technology - Occupational Therapy.
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