Tag: disability

Systematic review of the current literature related to disability and chronic fatigue syndrome

Abstract:

Objective: The objective of this evidence report was to perform a systematic review of the published literature to provide the Social Security Administration (SSA) with the best available evidence and most current medical knowledge regarding disability in persons with Chronic Fatigue Syndrome (CFS).

Search Strategy: English language and adult population published literature from 1988 to November 2001 was searched using MEDLINE, Current Contents, Cochrane Library, and PsychINFO databases and supplemented by a manual review of bibliographies of all accepted papers.

Selection Criteria: Interventional or observational studies of at least two adult patients reporting CFS according to either the CDC 1988, CDC 1994, Oxford 1991, or Australia 1990 criteria were accepted. Studies were required to report disability (evidence of a medically determinable physical or mental impairment) and data regarding employment or work.

Data Collection and Analysis: Data on patients, interventions, and outcomes were extracted from accepted studies. Studies were scored for quality and level of evidence. Data were summarized for study, patient, and treatment level characteristics as well as outcomes of interest. A panel of diverse technical experts and peer reviewers provided review and commentary on the draft report.

Main Results: Of 3,840 citations identified, 53 studies describing 4,558 patients with CFS met all eligibility criteria. Twenty-two of these studies described comparator groups of healthy controls totaling 775 patients. The majority of CFS patients represented in the 37 studies reporting employment status were unemployed. The evidence suggests that some individuals with CFS have cognitive or affective impairments on neuropsychological tests, but results are not consistent. Depression of greater severity is associated with unemployment, but no other impairment appeared to be consistently associated with disability or work outcomes. No specific interventions have been proven to be effective in restoring the ability to work. No specific patient characteristics have been identified as best predictors of positive employment outcomes in CFS patients. The patient’s level of functioning at the time of diagnosis should be compared to functioning prior to the onset of illness especially as it relates to work, school, social and home activities.

The major limitations of this review are related to the weaknesses inherent in the current medical and scientific published literature regarding CFS. Study designs were not sufficiently homogeneous to allow quantitative synthesis of individual study results, and external validity was low. While some studies reported test and scale results, this was highly variable with relatively sparse and inconsistent reporting of both baseline and outcome data. No studies specifically measured the impact of baseline impairment data or treatment interventions on work function or employment outcomes.

Conclusions: While relationships between various impairment measures and work/disability status might be explored in some cases, the best available evidence from the literature did not allow for determination of causality. The limitations inherent in the current literature review are noted and the research community is urged to conduct methodologically rigorous, longitudinal, interventional studies to determine what baseline characteristics are associated with inability to work, and what interventions are effective in restoring the ability to work in the CFS population.

 

Source: Ross SD, Levine C, Ganz N, Frame D, Estok R, Stone L, Ludensky V. Systematic review of the current literature related to disability and chronic fatigue syndrome. Evid Rep Technol Assess (Summ). 2002 Dec;(66):1-3. http://www.ncbi.nlm.nih.gov/books/NBK36735/ (Full article)

 

Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability

Abstract:

Chronic fatigue syndrome (CFS) is an illness that involves severe, prolonged exhaustion as well as neurologic, immunologic, and endocrine system pathology. Because the pathogenesis of CFS has yet to be determined, case definitions have relied on clinical observation in classifying signs and symptoms for diagnosis.

The current investigation examined differences between CFS as defined by Fukuda and colleagues and a set of criteria that has been stipulated for myalgic encephalomyelitis (ME). Dependent measures included psychiatric comorbidity, symptom frequency, symptom severity, and functional impairment. The ME and Fukuda et al. (1994) CFS criteria were compared with a group having chronic fatigue due to psychiatric reasons.

Significant differences occurred primarily with neurologic, neuropsychiatric, fatigue/weakness, and rheumatological symptoms. These findings suggest that it might be inappropriate to synthesize results from studies of this illness that use different definitions to select study populations.

 

Source: Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR. Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability. Eval Health Prof. 2003 Mar;26(1):3-22. http://www.ncbi.nlm.nih.gov/pubmed/12629919

 

Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome

Abstract:

The longitudinal course of subjective and objective neuropsychological functioning, psychological functioning, disability level, and employment status in chronic fatigue syndrome (CFS) was examined. The relations among several key outcomes at follow-up, as well as the baseline characteristics that predict change (e.g., improvement), were also evaluated.

The study sample consisted of 35 individuals who met the 1988 and 1994 CFS case definition criteria of the Centers for Disease Control (CDC) at intake. Participants were evaluated a mean of 41.9 (SEM = 1.7) months following their initial visit (range = 24-63 months).

Results indicated that objective and subjective attention abilities, mood, level of fatigue, and disability improve over time in individuals with CFS. Moreover, improvements in these areas were found to be interrelated at follow-up. Finally, psychiatric status, age, and between-test duration were significant predictors of outcome. Overall, the prognosis for CFS appears to be poor, as the majority of participants remained functionally impaired over time and were unemployed at follow-up, despite the noted improvements.

 

Source: Tiersky LA, DeLuca J, Hill N, Dhar SK, Johnson SK, Lange G, Rappolt G, Natelson BH. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Appl Neuropsychol. 2001;8(1):41-50. http://www.ncbi.nlm.nih.gov/pubmed/11388123

 

Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome

Abstract:

OBJECTIVE: To describe the educational, social, and symptomatic outcome of children and adolescents with chronic fatigue syndrome 13 years after illness onset.

METHODS: Between January 1984 and December 1987, 46 children and adolescents developed an illness suggestive of chronic fatigue syndrome. Follow-up questionnaires were obtained from 35 participants an average of 13 years after illness onset. Data were obtained concerning subsequent medical diagnoses, amount of school missed, presence and severity of current symptoms, and subjective assessment of degree of illness resolution.

RESULTS: Of the 35 participants, 24 were female (68.6%) and 11 were male (31.4%). Average age at illness onset was 12.1 years. Eight participants (22.9%) had an acute onset of symptoms, 27 (77.1%) had a gradual onset. No participant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up. Thirteen participants (37.1%) considered themselves resolved of illness at follow-up; 15 participants (42.9%) considered themselves well but not resolved; 4 (11.4%) considered themselves chronically ill; and 3 (8.6%) considered themselves more ill than during the early years of illness. Correlation with the Medical Outcomes Study Short Form Health Survey was good for current level of symptoms and degree of recovery. Eight participants (22.9%) missed >2 years of school, and 5 of these were still ill at follow-up. Amount of school missed correlated with both illness severity at follow-up and perceived social impact of the illness.

CONCLUSIONS: These data demonstrate the presence of an illness consistent with the current definition of chronic fatigue syndrome. Eighty percent of children and adolescents affected had a satisfactory outcome from their fatiguing illness, although the majority of these participants had mild to moderate persisting symptoms. Twenty percent of participants remain ill with significant symptoms and activity limitation 13 years after illness onset. Chronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected.

 

Source: Bell DS, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics. 2001 May;107(5):994-8. http://www.ncbi.nlm.nih.gov/pubmed/11331676

 

Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome

Abstract:

The objective of the study was to compare the Euroqol EQ-5D (Euroqol) and short-form 36 (SF-36) health questionnaires in patients with chronic fatigue syndrome (CFS).

One hundred and twenty-seven outpatients referred to a hospital-based infectious disease clinic with a diagnosis of CFS were contacted by post and asked to complete both questionnaires. Additional data were determined from hospital casenotes. Eighty-five patients returned correctly completed questionnaires.

Euroqol health values and visual analogue scale (VAS) scores were strongly and significantly correlated with all dimensions of the SF-36, with the exception of physical limitation of role. SF-36 dimensions were in turn strongly and significantly correlated with each other, with the same exception.

Patients reported a high degree of physical disability and a moderate degree of emotional or psychological ill-health. The Euroqol elements dealing with mobility and self-care referred to inappropriately severe degrees of disability for these patients with CFS. Similarly some dimensions in the SF-36 were oversensitive and did not discriminate between patients with moderate or severe disability.

It was concluded that Euroqol scores correlated strongly with SF-36 scores and provided useful information about patients with CFS and that Euroqol would be a useful tool for the rapid assessment of health status in CFS. The current Euroqol instrument refers to inappropriately severe degrees of disability for patients with CFS and would need to be modified to be maximally useful in this situation.

 

Source: Myers C, Wilks D. Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome. Qual Life Res. 1999;8(1-2):9-16. http://www.ncbi.nlm.nih.gov/pubmed/10457734

 

Relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome

Abstract:

OBJECTIVES: To examine the relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome, and determine whether the relation is independent of psychiatric factors.

METHODS: The subjects were 53 patients with chronic fatigue syndrome and 32 healthy controls who did not exercise regularly. Subjects were administered a structured psychiatric interview and completed questionnaires focusing on depression and functional disability. They also completed a battery of standardised neuropsychological tasks focusing on the cognitive domains that patients with chronic fatigue syndrome experience as particularly difficult: memory (verbal and visual), and attention/concentration. A test score was defined as failing when it was > or =2 SD below the mean of the healthy controls after controlling for demographic factors.

RESULTS: Those patients with chronic fatigue syndrome with higher numbers of failing neuropsychological test scores reported significantly more days of general inactivity in the past month than those with fewer failing scores. This result remained significant even after partialling out the contribution of the presence of a comorbid axis I psychiatric episode and the overall level of depressive symptomology. Patients with failing verbal memory scores were particularly functionally disabled compared with those with passing scores.

CONCLUSION: A relation was found between cognitive impairment and functional disability which could not be explained entirely on the basis of psychiatric factors.

Comment in: The importance of mental fatigue. [J Neurol Neurosurg Psychiatry. 1998]

 

Source: Christodoulou C, DeLuca J, Lange G, Johnson SK, Sisto SA, Korn L, Natelson BH. Relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 1998 Apr;64(4):431-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/

 

Chronic fatigue syndrome. Definition, diagnostic measures and therapeutic possibilities

Abstract:

This article reviews the chronic fatigue syndrome (CFS), a disorder whose etiology is unknown. The diagnostic criteria proposed in 1994 by the CDC and the International Chronic Fatigue Syndrome Study Group are introduced.

In contrast to widespread belief, there are no laboratory tests available to underpin the diagnosis of CFS; the diagnosis is made solely on the basis of clinical criteria. In the differential diagnosis, the exclusion of other conditions that can cause chronic fatigue, such as neuropsychiatric or sleep disorders, is of critical importance.

In this context, the question as to whether CFS is a clinical entity that can be differentiated from psychiatric diagnoses, such as depression, somatoform disorder, or neurasthenia, is discussed. At the moment, there is no specific therapy for CFS. Therefore, therapeutic approaches are limited to symptomatic management of the concomitant sleep disturbances, pain, or psychiatric symptoms, such as depression.

Patients may benefit from cognitive behavioral therapy, as this may help then to identify and exclude factors contributing to and maintaining chronic fatigue. An integrated medical and psychological approach should be adopted, with the aim of preventing significant secondary negative results of the illness, such as interpersonal conflicts or chronic disability.

Comment in: “Chronic fatigue syndrome“. Nervenarzt. 1997

 

Source: Lieb K, Dammann G, Berger M, Bauer J. Chronic fatigue syndrome. Definition, diagnostic measures and therapeutic possibilities. Nervenarzt. 1996 Sep;67(9):711-20. [Article in German] http://www.ncbi.nlm.nih.gov/pubmed/8992368

 

Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use

Abstract:

OBJECTIVES: Disabling chronic fatigue that does not meet criteria for chronic fatigue syndrome (CFS) or fibromyalgia (FM) is a condition thought to be associated with substantial disability and an apparently high use of health-care services. The authors compare patients who have chronic fatigue, CFS, FM, or CFS and FM together (CFS+FM) on employment status, self-reported disability, number of medical care visits, type of services obtained, and other diagnoses received.

METHODS: The authors studied 402 patients from a university-based chronic fatigue clinic. All patients underwent an initial structured diagnostic assessment. One hundred forty-seven patients met case criteria for CFS, 28 for FM, 61 for CFS+FM, and 166 fell in the residual chronic fatigue group. Of these patients, 388 completed a follow-up questionnaire an average of 1.7 years later. Chi-squared tests and analysis of variance were used to compare groups on follow-up measures of health-care use and disability.

RESULTS: Patients with chronic fatigue, CFS, FM, and CFS+FM were similar in terms of disability and health-care use, though those with CFS+FM were significantly more likely to be unemployed and to use more chiropractic and “other” provider services. Rates of unemployment ranged from 26% (chronic fatigue) to 51% (CFS+FM). Overall, patients reported a mean of 21 visits to a wide variety health-care providers during the previous year, with no significant differences between groups.

CONCLUSIONS: Chronic fatigue, CFS, and FM are associated with considerable personal and occupational disability and low rates of employment. The potentially large economic burden of these disorders underscores the need for accurate estimates of direct and indirect costs, the relative contribution of individual factors to disability, and the need to develop targeted rehabilitation programs.

 

Source: Bombardier CH, Buchwald D. Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use. Med Care. 1996 Sep;34(9):924-30. http://www.ncbi.nlm.nih.gov/pubmed/8792781

 

Functional capacity evaluations of persons with chronic fatigue immune dysfunction syndrome

Abstract:

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is estimated to affect 2 to 5 million people in the United States. Despite its high incidence, persons with CFIDS have been neglected by the medical community mainly because there is no singular confirming diagnostic test or proven effective treatment.

The CFIDS population is incorrectly stereotyped as upper-middle-class, white, female hypochondriacs; consequently, symptoms often are belittled or ignored. In reality, CFIDS is a severe medical condition that affects women, men, and children of any race and often causes long-term or total disability.

The results of a modified functional capacity evaluation developed by the author and completed on 86 persons with CFIDS between 1988 and 1990 confirm that this population has severe physical and cognitive disabilities that affect their professional, familial, and social lives. The results of these evaluations are used to present a profile of persons with CFIDS that can serve as a basis for understanding this population and for guiding intervention.

 

Source: Barrows DM. Functional capacity evaluations of persons with chronic fatigue immune dysfunction syndrome. Am J Occup Ther. 1995 Apr;49(4):327-37. http://www.ncbi.nlm.nih.gov/pubmed/7785715

 

Self help organization’s advice on myalgic encephalomyelitis

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

 

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/