Tag: disability

Illness intrusiveness in myalgic encephalomyelitis: an exploratory study

Abstract:

This study assessed the relationship between illness intrusiveness, symptoms, disability and depression in patients with myalgic encephalomyelitis (ME). Participants were 16 patients with ME and eight patients with ME plus co-morbid disorders. The patients with co-morbid disorders reported greater illness intrusiveness than the patients with ME alone, but there were no differences between the groups on the other variables. Significant correlations were found between illness intrusiveness on the one hand, and fatigue, cognitive dysfunction, disability and depression, on the other. We conclude that ME is a disabling illness, which has a major impact on various life domains.

 

Source: Goudsmit EM, Stouten B, Howes S. Illness intrusiveness in myalgic encephalomyelitis: an exploratory study. J Health Psychol. 2009 Mar;14(2):215-21. Doi: 10.1177/1359105308100205. https://www.ncbi.nlm.nih.gov/pubmed/19237488

 

Validation of the energy index point score to serially measure the degree of disability in patients with chronic fatigue syndrome

Abstract:

BACKGROUND: A simple quantitative accurate method for assessing the degree of fatigue in patients with chronic fatigue syndrome (CFS) is necessary for physicians and patients. Severity of the disease and recovery can, thus, be assayed.

PATIENT AND METHODS: From February 1-27, 2007, fifty-six consecutive CFS patients at a single treatment center were simultaneously evaluated by the patient with the fatigue severity score (FSS), and by consensus of both patient and physician by the energy index (EI) point score.

RESULTS: The FSS and EI correlated well, 0.67, p<0.001.

CONCLUSION: The El point score is a validated reliable method to assess fatigue in CFS patients.

 

Source: Lerner AM, Beqaj SH, Fitzgerald JT. Validation of the energy index point score to serially measure the degree of disability in patients with chronic fatigue syndrome. In Vivo. 2008 Nov-Dec;22(6):799-801. http://iv.iiarjournals.org/content/22/6/799.long (Full article)

 

Assessment of fibromyalgia & chronic fatigue syndrome: a new protocol designed to determine work capability–chronic pain abilities determination (CPAD)

Abstract:

The objective was to design a protocol to assess work ability in people suffering ill-defined painful and disabling disorders, the outstanding prototype of which is fibromyalgia/chronic fatigue syndrome (FM/CSF).Following an extensive literature search, the mos appropriate components of current methods of assessment of physical and cognitive abilities were incorporated into the protocol, occasionally with appropriate modification to suit the specific requirements of the individual.

The initial part of the assessment consists of a standard history taking, principally focusing on the patient’s self-reported physical and cognitive abilities and disabilities, as well as the completion of established pain and fatigue scales, and relevant disability questionnaires.

Following this, physical and cognitive abilities are objectively assessed on two separate occasions, utilizing computerized hand-held dynamometers, inclinometers, algometers, and force dynamometers. Specific work simulation tests using the industrial standards Methods-Time-Measurement testing are availed of, as is aerobic testing using the Canadian Aerobic Fitness Test (CAFT). Objective computerised neuro-cognitive testing are also utilised as an integral component of the assessment. All results are then subject to specific computerized analysis and compared to normative and standardised work-based databases.

The designed system produces reliable, consistent and reproducible results. It also proves capable of detecting any inconsistencies in patient input and results, in addition to being independent of any possible assessor bias. A new protocol has been designed to determine the working capability of individuals who suffer from various chronic disabling conditions, and represents a significant step forward in a difficult but rapidly expanding area of medical practice.

 

Source: Kelly M, Gagne R, Newman JD, Olney C, Gualtieri C, Trail D. Assessment of fibromyalgia & chronic fatigue syndrome: a new protocol designed to determine work capability–chronic pain abilities determination (CPAD). Ir Med J. 2008 Oct;101(9):277-8. https://www.ncbi.nlm.nih.gov/pubmed/19051616

 

Chronic fatigue syndrome in children aged 11 years old and younger

Abstract:

Children in primary school can be very disabled by chronic fatigue syndrome or ME (CFS/ME). The clinical presentation in this age group (under 12 years old) is almost identical to that in older children.

AIM: To describe children who presented to the Bath paediatric CFS/ME service under the age of 12 years.

METHOD: Inventories measuring fatigue, pain, functional disability, anxiety, family history and symptoms were collected prospectively for all children presenting to the Bath CFS/ME service between September 2004 and April 2007. Data from children who presented to the service under the age of 12 are described and compared to those who presented at age 12 or older.

RESULTS: 178 children (under the age of 18) were diagnosed as having CFS/ME using the RCPCH criteria out of 216 children assessed. The mean age at assessment for children with CFS/ME was 14.5 years old (SD 2.9). Thirty-two (16%) children were under 12 years at the time of assessment, four children were under 5 years and the youngest child was 2 years old. Children under 12 were very disabled with mean school attendance of just over 40% (average 2 days a week), Chalder fatigue score of 8.29 (CI 7.14 to 9.43 maximum possible score = 11) and pain visual analogue score of 39.7 (possible range 0-100). Comparison with children aged 12 or older showed that both groups were remarkably similar at assessment. Twenty-four out of the 26 children with complete symptom lists would have been diagnosed as having CFS/ME using the stricter adult Centers of Disease Control and prevention (CDC) criteria.

CONCLUSION: Disability in the under-12 age group was high, with low levels of school attendance, high levels of fatigue, anxiety, functional disability and pain. The clinical pattern seen is almost identical to that seen in older children, and the majority of children would also be diagnosed as having CFS/ME using the stricter adult definition.

 

Source: Davies S, Crawley E. Chronic fatigue syndrome in children aged 11 years old and younger. Arch Dis Child. 2008 May;93(5):419-21. doi: 10.1136/adc.2007.126649. Epub 2008 Jan 11. https://www.ncbi.nlm.nih.gov/pubmed/18192312

 

Long-term predictors of outcome in fatigued employees on sick leave: a 4-year follow-up study

Abstract:

BACKGROUND: Persistent fatigue is strongly associated with functional status and can lead to absenteeism and work disability. Despite several prognostic studies on chronic fatigue, little attention has been paid to occupational outcomes.

METHOD: A total of 127 fatigued employees on sick leave were followed-up after 4 years to determine long-term predictors of work disability, fatigue caseness and chronic fatigue syndrome (CFS)-like caseness. Measures included fatigue, physical functioning, illness attributions, psychological problems and emotional exhaustion.

RESULTS: Thirty-three participants (26%) were receiving work disability benefits at the 4-year follow-up. Older age and lower levels of physical functioning predicted work disability. Weaker psychological attributions and lower levels of physical functioning were predictors of fatigue caseness. CFS-like caseness was predicted by female gender and lower levels of physical functioning. Self-reported physical functioning remained a strong and statistically significant determinant of work disability [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.24-0.87] and CFS-like caseness (OR 0.20, 95% CI 0.09-0.43) after controlling for confounders.

CONCLUSIONS: This study suggests that physical functioning plays an important role in the persistence of fatigue complaints and work disability in employees on sick leave. The course of fatigue is a complex process, and exploring temporal relationships between fatigue, functional status and work status in future research could provide valuable information for the improvement of fatigue management.

 

Source: Leone SS, Huibers MJ, Kant I, Van Schayck CP, Bleijenberg G, André Knottnerus J. Long-term predictors of outcome in fatigued employees on sick leave: a 4-year follow-up study. Psychol Med. 2006 Sep;36(9):1293-300. Epub 2006 Jun 6. https://www.ncbi.nlm.nih.gov/pubmed/16753082

 

Chronic fatigue syndrome-like caseness as a predictor of work status in fatigued employees on sick leave: four year follow up study

Abstract:

OBJECTIVE: To assess whether CFS-like caseness (meeting the criteria for chronic fatigue syndrome (CFS)) predicts work status in the long term.

METHODS: Prospective study in a sample of fatigued employees absent from work. Data were collected at baseline and four years later, and included CFS-like caseness and work status (inactive work status and full work incapacity).

RESULTS: CFS-like cases at baseline were three times more likely to be unable to work at follow up than fatigued employees who did not meet CFS criteria at baseline (ORs 3-3.3). These associations grew even stronger when demographic and clinical confounders were controlled for (ORs 3.4-4.4).

CONCLUSION: A CFS-like status (compared to non-CFS fatigue) proved to be a strong predictor of an inactive work status and full work incapacity in the long term. Since little is known about effective interventions that prevent absenteeism and work incapacity or facilitate return to work in subjects with chronic fatigue, there is a great need for powerful early interventions that restore or preserve the ability to work, especially for workers who meet criteria for CFS.

 

Source: Huibers MJ, Leone SS, Kant IJ, Knottnerus JA. Chronic fatigue syndrome-like caseness as a predictor of work status in fatigued employees on sick leave: four year follow up study. Occup Environ Med. 2006 Aug;63(8):570-2. Epub 2006 May 12. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078121/ (Full article)

 

Employment status in chronic fatigue syndrome. A cross-sectional study examining the value of exercise testing and self-reported measures for the assessment of employment status

Abstract:

OBJECTIVE: To examine the value of exercise testing and self-reported disability for the assessment of employment status in patients with chronic fatigue syndrome.

DESIGN: Cross-sectional observational study.

SETTING: A university-based chronic fatigue clinic.

SUBJECTS: Fifty-four consecutive, Flemish, employed (not self-employed) chronic fatigue syndrome patients (49/54 female).

INTERVENTIONS: Not applicable.

MAIN OUTCOME MEASURES: Participants were questioned about their current and premorbid employment status, filled in the Chronic Fatigue Syndrome Activities and Participation Questionnaire (CFS-APQ), the Medical Outcomes Short Form 36 Health Status Survey (SF-36), and performed a maximal exercise test on a bicycle ergometer with continuous monitoring of cardiorespiratory variables.

RESULTS: A significant association was observed between the current employment rate and two SF-36 subscales (i.e., role limitations due to physical functioning and social functioning; rho = 0.39 and 0.35 respectively) (n = 54). Analysing only the female chronic fatigue syndrome patients (n = 49), the current employment rate correlated significantly with the peak workload (rho = 0.38).

CONCLUSIONS: The associations between either exercise testing or self-reported disability and employment status are too weak to predict employment status.

 

Source: Nijs J, Van de Putte K, Louckx F, De Meirleir K. Employment status in chronic fatigue syndrome. A cross-sectional study examining the value of exercise testing and self-reported measures for the assessment of employment status. Clin Rehabil. 2005 Dec;19(8):895-9. http://www.ncbi.nlm.nih.gov/pubmed/16323389

 

Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome

Abstract:

OBJECTIVE: The social model of disability has had a major influence on the academic field of disability studies and on contemporary understandings of the causes and experience of disability. The purpose of this study was to examine the adequacy of the social model for explaining the disability experience of persons with chronic fatigue syndrome (CFS).

METHODS: This qualitative study examined the experiences of 47 adults with CFS participating in a research project that aimed to evaluate a participant-designed rehabilitation program. Data were aggregated from focus group interviews, open-ended questionnaires, progress notes, and from a program evaluation questionnaire. Data analysis was based on a grounded theory approach and used triangulation of multiple data sources and member checks to assure dependability of findings.

RESULTS: Four themes emerged from the analysis: (1) minimization and mistrust of the disability; (2) negative experiences of impairment; (3) lack of identification with the disability community; and (4) the focus on advocacy as a quest for legitimacy. These themes varied in the extent to which they conformed to the principles set forth by the social model.

CONCLUSIONS: Although the social model has important contributions to lend to occupational therapy practice, it is important to recognize that it may not capture the full reality of disability. In particular, the social model has serious limitations in describing the disability experience of individuals with disabilities who do not have visibly obvious disabilities and whose impairments do not conform to the traditional viewpoint of disability.

 

Source: Taylor RR. Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome. Am J Occup Ther. 2005 Sep-Oct;59(5):497-506. http://www.ncbi.nlm.nih.gov/pubmed/16268016

 

Kinesiophobia in chronic fatigue syndrome: assessment and associations with disability

Abstract:

OBJECTIVES: To investigate aspects of the validity of the total scores of the Tampa Scale for Kinesiophobia (TSK), Dutch Version, which was modified to make it an appropriate questionnaire for the assessment of kinesiophobia (fear of movement) in chronic fatigue syndrome (CFS) patients (the Dutch TSK-CFS), and, using this assessment tool, to examine the associations between kinesiophobia, exercise capacity, and activity limitations and participation restrictions in patients with CFS.

DESIGN: Prospective observational studies.

SETTING: An outpatient fatigue clinic.

PARTICIPANTS: In the first study, 40 patients fulfilling the 1994 US Centers for Disease Control and Prevention (CDC) criteria for CFS were enrolled. The sample of the second study consisted of 51 CDC-defined patients with CSF.

INTERVENTIONS: Not applicable. Main outcome measures Study 1: Subjects completed a set of questionnaires; the Utrechtse Coping List (UCL), the Dutch TSK-CFS, and the Dutch Baecke Questionnaire of Habitual Physical Activity. Study 2: All patients completed 2 questionnaires (Chronic Fatigue Syndrome Activities and Participation Questionnaire [CFS-APQ], Dutch TSK-CFS) and performed a maximal exercise stress test on a bicycle ergometer. The heart rate was monitored continuously by use of an electrocardiograph. Metabolic and ventilatory parameters were measured through spirometry.

RESULTS: Study 1: The Cronbach alpha coefficient for the individual item scores on the TSK-CFS was .80. The total scores on the Dutch TSK-CFS showed a statistically significant correlation with both the avoidance/abide subscale of the UCL (Spearman rho=.35, P=.029) and the total score of the Baecke Questionnaire (rho=-.45, P=.004). Study 2: The total scores on the Dutch TSK-CFS showed a statistically significant correlation with the total scores on the CFS-APQ (rho=.39, P=.004). No statistically significant associations were observed between the exercise capacity parameters and the total scores on the Dutch TSK-CFS.

CONCLUSIONS: These results provide evidence for the internal consistency and the convergent and congruent validity of the scores obtained by use of the Dutch TSK-CFS. Kinesiophobia appears to be associated with activity limitations/participation restrictions but not with exercise capacity in patients with CFS.

 

Source: Nijs J, De Meirleir K, Duquet W. Kinesiophobia in chronic fatigue syndrome: assessment and associations with disability. Arch Phys Med Rehabil. 2004 Oct;85(10):1586-92. http://www.ncbi.nlm.nih.gov/pubmed/15468015

 

Disability and chronic fatigue syndrome: a focus on function

Abstract:

BACKGROUND: Evidence was sought in the published literature on how best to measure, monitor, and treat disability in patients with chronic fatigue syndrome (CFS).

METHODS: A systematic review was performed of English-language literature published between January 1, 1988, and November 15, 2001. Interventional and observational studies of adults with CFS were eligible if they reported measures of disability and employment. A qualitative synthesis of results relating impairment measures to employment was performed.

RESULTS: Of 3840 studies identified, 37 reported employment status and some measure of mental or physical impairment associated with disability. Most patients with CFS in these studies were unemployed. In 22 studies, the employment status of control subjects was also available. Only depression seemed to be associated with unemployment in patients with CFS. No other measurable impairment seemed to be consistently associated with disability or work outcomes. Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work. No specific patient characteristics were identified as best predictors of positive employment outcomes. No quantitative syntheses of results were performed.

CONCLUSIONS: For questions of disability and employment in CFS, the limitations inherent in the current literature are extensive. Methodologically rigorous, longitudinal, and interventional studies are needed to determine baseline characteristics that are associated with the inability to work and interventions that are effective in restoring the ability to work in the CFS population. Simple and consistent evaluations of functional capacity in patients with CFS are needed.

 

Source: Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB. Disability and chronic fatigue syndrome: a focus on function. Arch Intern Med. 2004 May 24;164(10):1098-107. http://www.ncbi.nlm.nih.gov/pubmed/15159267