Health Status – Page 7 – American ME and CFS Society

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

Subjective quality of life in patients with chronic fatigue syndrome

Abstract:

The aim of this study was to (1) assess Subjective Quality of Life (SQOL) of patients with Chronic Fatigue Syndrome (CFS) using a generic concept and to compare the findings with those in groups with mental disorders and healthy subjects, and (2) investigate whether and, if so, to what extent socio-demographic and clinical variables predict SQOL in CFS patients.

Seventy-three patients diagnosed with CFS were randomly selected and interviewed from two specialised clinics. CFS was diagnosed using the Oxford Criteria. SQOL was assessed on the Manchester Short Assessment of Quality of Life (MANSA) and Health-Related Quality of Life (HRQOL) on the Medical Outcome Study Short-Form 36 (MOS) SF-36. A battery of mood and symptom questionnaires, including the Symptom Checklist Questionnaire (SCL-90-R), was administered to assess various aspects of symptomatology as potential predictor variables.

Multiple regression analyses were conducted to identify predictors of SQOL. Overall, SQOL was low in CFS patients and less favourable than in groups with mental disorders and healthy subjects. Satisfaction was particularly low with life as a whole, leisure activities and financial situation. Whilst SQOL was only moderately correlated with HRQOL, the SCL-90-R score, especially SCL-90-R Depression scale score, was the best predictor of SQOL explaining 35% of the variance. HRQOL and generic SQOL appear distinct despite some overlap.

The findings underline that SQOL is significantly disrupted in CFS patients. Depressive symptoms are statistically the strongest ‘predictor’ of SQOL, although the direction of the relationship is not established. These data suggest that treatment of depression associated with CFS, regardless of causation, could help to improve SQOL in CFS patients.

Source: Rakib A, White PD, Pinching AJ, Hedge B, Newbery N, Fakhoury WK, Priebe S. Subjective quality of life in patients with chronic fatigue syndrome. Qual Life Res. 2005 Feb;14(1):11-9. http://www.ncbi.nlm.nih.gov/pubmed/15789937

Perceived stigma in functional somatic syndromes and comparable medical conditions

Abstract:

OBJECTIVE: To determine if patients with functional somatic syndromes (FSS) perceive greater levels of stigma than patients with comparable medical conditions that have a clear medical pathology.

METHODS: Patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), or irritable bowel syndrome (IBS) were compared to multiple sclerosis (MS), rheumatoid arthritis (RA), and inflammatory bowel disease (IBS), respectively.

RESULTS: There were greater levels of perceived stigma in the combined group of FSS compared to the medical control group. When each FSS was compared to its matched control group, only CFS had a higher level of perceived stigma. These results remained when controlling for other variables relevant to stigma.

CONCLUSIONS: The higher level of perceived stigma in CFS may be due to the ambiguity of its status as a medical condition. The absence of this effect in FM and IBS is consistent with a greater level of acceptance of these disorders as medical illnesses.

Source: Looper K, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004 Oct;57(4):373-8. http://www.ncbi.nlm.nih.gov/pubmed/15518673

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

Disability evaluation in chronic fatigue syndrome: associations between exercise capacity and activity limitations/participation restrictions

Abstract:

OBJECTIVE: In an attempt to examine whether impairments in cardiorespiratory fitness are associated with daily functioning in patients with chronic fatigue syndrome (CFS), this study addresses the correlations between exercise capacity and activity limitations/participation restrictions.

DESIGN: Prospective observational study.

SETTING: An outpatient tertiary care, chronic fatigue clinic at the Vrije Universiteit Brussel (VUB), Belgium.

SUBJECTS: Seventy-seven patients fulfilling the 1994 Centers for Disease Control and Prevention (CDC) case definition for CFS.

INTERVENTIONS: All patients filled in the Chronic Fatigue Syndrome Activities and Participation Questionnaire (CFS-APQ) and performed a maximal exercise stress test on a bicycle ergometer. Heart rate was monitored continuously by use of an electrocardiograph. Metabolic and ventilatory parameters were measured through spirometry.

RESULTS: A statistically significant correlation between the score obtained with the CFS-APQ and the body weight-adjusted peak oxygen uptake (Spearman rho = -0.32; p = 0.005), functional aerobic impairment (rho = 0.33; p = 0.004), workload/body weight (rho = -0.30; p = 0.009), exercise duration (rho = -0.30; p = 0.008), and the percentage of target heart rate achieved (rho = -0.33; p = 0.004) was observed. The correlations between the remaining exercise capacity parameters and the scores obtained with the CFS-APQ all indicated a trend towards association (0.01 <p<0.05).

CONCLUSIONS: These results suggest a moderate association between exercise capacity and activity limitations/participation restrictions in patients with CFS. The observed correlations lack strength to predict activity limitations/ participation restriction based on exercise capacity parameters. Disability evaluation in CFS should therefore encompass both exercise capacity testing and measurements at the activity/participation dimension.

Source: Nijs J, De Meirleir K, Wolfs S, Duquet W. Disability evaluation in chronic fatigue syndrome: associations between exercise capacity and activity limitations/participation restrictions. Clin Rehabil. 2004 Mar;18(2):139-48. http://www.ncbi.nlm.nih.gov/pubmed/15053122

Social support and the persistence of complaints in chronic fatigue syndrome

Abstract:

BACKGROUND: Several studies suggested that the surroundings of chronic fatigue syndrome (CFS) patients are of importance in the persistence of complaints. Contrary to what was expected, participation in support groups has not led to clinical improvement. The purpose of the present study was to describe social support in CFS patients as compared with other fatigued and non-fatigued groups. Further, changes in social support and the influence of social support on the course of CFS over a period of more than 1 year were studied in patients with and without treatment.

METHODS: Baseline data were assessed in 270 CFS patients, 150 disease-free breast cancer patients, 151 fatigued employees on sick-leave and 108 healthy subjects using the Social Support List and Significant Others Scale. CFS patients were followed in cognitive behaviour therapy (CBT), guided support groups and natural course at 8 and 14 months.

RESULTS: CFS patients and fatigued employees reported more negative interactions and insufficiency of supporting interactions than cancer patients and healthy controls. No differences in frequency of supporting interactions were found. Negative interactions decreased significantly after treatment with CBT, but did not change in support groups or natural course. In the natural course, higher fatigue severity at 8 months was predicted by more negative interactions at baseline.

CONCLUSIONS: In CFS patients and fatigued employees, social support is worse than in disease-free cancer patients and healthy controls. Lack of social support was identified as a new factor in the model of perpetuating factors of fatigue severity and functional impairment in CFS.

Source: Prins JB, Bos E, Huibers MJ, Servaes P, van der Werf SP, van der Meer JW, Bleijenberg G. Social support and the persistence of complaints in chronic fatigue syndrome. Psychother Psychosom. 2004 May-Jun;73(3):174-82. http://www.ncbi.nlm.nih.gov/pubmed/15031590

Chronic fatigue syndrome and sexual dysfunction

Abstract:

OBJECTIVE: The study was undertaken to determine if ambulant female patients with the chronic fatigue syndrome (CFS) report problems with their sexual functioning.

METHODS: We studied 35 female CFS patients and 36 healthy female controls. The severity of CFS was measured with a fatigue questionnaire and the presence and severity of sexual dysfunction with a questionnaire about sexual functioning.

RESULTS: The mean fatigue score was 24.8 in the CFS patients and 11.9 in the controls (P=.000). No increase in sexual dysfunction was found in the CFS group. The control group showed negative correlations between the score of the fatigue questionnaire and the frequency of “sexual fantasies,” “(desire for) sexual contact” and “satisfaction with sex life.” Such correlations were absent in the CFS group.

CONCLUSION: The satisfaction with sex life was similar in patients and controls. The results suggest that patients and controls have a different perception of fatigue.

Source: Vermeulen RC, Scholte HR. Chronic fatigue syndrome and sexual dysfunction. J Psychosom Res. 2004 Feb;56(2):199-201. http://www.ncbi.nlm.nih.gov/pubmed/15016578

Financial, occupational, and personal consequences of disability in patients with chronic fatigue syndrome and fibromyalgia compared to other fatiguing conditions

Abstract:

OBJECTIVE: To examine the nature and degree of self-reported disability in patients with chronic fatigue syndrome (CFS) and its associated conditions, fibromyalgia (FM) and subsyndromal fatigue (CF), compared with a chronically fatiguing but unrelated medical condition (MED).

METHODS: Six hundred and thirty patients evaluated at the University of Washington Chronic Fatigue Clinic were sent questionnaires asking them to identify the financial, occupational, and personal consequences of their fatiguing illness. Thorough medical evaluations had previously applied accepted criteria for defining CFS, FM, and CF.

RESULTS: The FM groups (those with and without CFS) were among the least employed. Likewise, the FM and CFS groups, more frequently than the other groups, endorsed loss of material possessions (such as car), loss of job, and loss of support by friends and family, as well as recreational activities as a result of their fatiguing illness. There were no reliable differences between groups in use of disability benefits.

CONCLUSION: There is substantial illness-related disability among those evaluated at a specialized chronic fatigue clinic. Those reporting the most pervasive disability met criteria for FM either alone or in conjunction with CFS. Employers and personal relations of patients with chronic fatigue should make a greater effort to accommodate the illness-related limitations of these conditions, especially for those with FM and CFS.

Source: Assefi NP, Coy TV, Uslan D, Smith WR, Buchwald D. Financial, occupational, and personal consequences of disability in patients with chronic fatigue syndrome and fibromyalgia compared to other fatiguing conditions. J Rheumatol. 2003 Apr;30(4):804-8. http://www.ncbi.nlm.nih.gov/pubmed/12672203