Tag: functional capacity

Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire

Abstract:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Effective tools to assess functional capacity (FC) are severely lacking which has significant consequences for timely diagnosis, assessments for patient disability benefits and assessing the impact and effectiveness of interventions.

In interventional research the inability to assess FC can result in an incomplete assessment of the potential effect of the intervention. Specifically of concern is that if an intervention is effective in reducing symptom load, patients may increase their activity level to reach a pre-intervention symptom load. Thus, if FC is not accurately assessed, beneficial treatment outcomes may be missed.

To address this issue, using extensive, repeated patient feedback we have developed a new questionnaire, FUNCAP, to achieve optimal FC assessment in ME/CFS patients.

The questionnaire covers eight domains and activity types: A. Personal hygiene / basic functions, B. Walking / movement, C. Being upright, D. Activities in the home, E. Communication, F. Activities outside the home, G. Reactions to light and sound, and H. Concentration.

Through five rounds of anonymous web-based surveys and a further test – retest validation round, two versions of the questionnaire were developed; a longer version comprising 55 questions (FUNCAP55) to improve diagnostic and disability benefit/ insurance FC assessments and a shorter version (FUNCAP27) for interventional research and less extensive FC assessments. FUNCAP may also be useful in other conditions where fatigue and PEM is present, such as Long Covid.

Source: Sommerfelt, K.; Schei, T.; Seton, K.A.; Carding, S.R. Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire. Preprints 2023, 2023092091 https://www.preprints.org/manuscript/202309.2091/v1 (Full text available as PDF file)

Assessment of short- and long-term functionality and quality of life in patients with post-acute COVID-19 syndrome

Abstract:

Background: Although the number of new cases of coronavirus 2019 (COVID-19) has been drastically reduced worldwide, patients who demonstrate long-term symptoms need more attention from health systems, as these symptoms can negatively affect functionality and quality of life.

Objective: To evaluate muscle function and quality of life at 3, 6, 9 and 12 months in patients with post-acute COVID-19 syndrome and to assess their associations with general fatigue and lung function.

Methods: This observational and longitudinal study evaluated patients with post-acute COVID-19 syndrome. Participants were subjected to the following evaluations: Short Form-36; handgrip strength; Functional Assessment of Chronic Illness Therapy-Fatigue scale; and spirometry.

Results: Among the 350 participants who were evaluated in the third month, 74.6%, 61.4% and 45.4% reported general fatigue, dyspnoea and cough, respectively. In the comparisons between the third month and the sixth month, there were significant increases in Functional Assessment of Chronic Illness Therapy-Fatigue scale, pulmonary function and several Short Form-36 domains. In the comparisons between the sixth month and the ninth month, there was a significant increase only in the social functioning domain of the Short Form-36. In the comparisons between the ninth month and the twelfth month, there was an increase only in some Short Form-36 domains. Significant correlations were observed between the Short Form-36 domains with Functional Assessment of Chronic Illness Therapy-Fatigue scale, handgrip strength and pulmonary function.

Conclusion: In patients with post-acute COVID-19 syndrome, there was a progressive improvement in quality of life, general fatigue and pulmonary function during the 12 months of follow-up, with this improvement being more pronounced in the first 6 months. There was a relationship between functionality and quality of life in these patients.

Source: de Azevedo Vieira JE, Mafort TT, Monnerat LB, da Cal MS, Ghetti ATA, Lopes AJ. Assessment of short- and long-term functionality and quality of life in patients with post-acute COVID-19 syndrome. J Back Musculoskelet Rehabil. 2023 Feb 2. doi: 10.3233/BMR-220308. Epub ahead of print. PMID: 36776041. https://content.iospress.com/articles/journal-of-back-and-musculoskeletal-rehabilitation/bmr220308 (Full text)

Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Abstract:

A core criterion for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) is a substantial reduction in functioning from pre-illness levels. Despite its ubiquity in diagnostic criteria, there is considerable debate regarding how to measure this domain. The current study assesses five distinct methods for measuring substantial reductions. The analysis used an international, aggregated dataset of patients (N = 2,368) and controls (N=359) to compare the effectiveness of each method.

Four methods involved sophisticated analytic approaches using the Medical Outcomes Survey Short Form-36; the fifth method included a single self-report item on the DePaul Symptom Questionnaire (DSQ). Our main finding was that all methods produced comparable results, though the DSQ item was the most valid in differentiating patients from controls. Having a simple, reliable method to capture a substantial reduction in functioning has considerable advantages for patients and health care workers.

Source: Wiedbusch E, Jason LA. Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Arch Community Med. 2022;4(1):59-63. doi: 10.36959/547/653. Epub 2022 Apr 21. PMID: 35673386; PMCID: PMC9168545. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9168545/ (Full text)

Stigma in Myalgic Encephalomyelitis and its association with functioning

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is categorised by the World Health Organisation as a neurological condition. It is poorly understood and people with ME/CFS report experiencing stigma. Research suggests that stigma might be linked to functional ability.

Purpose: This study investigated the relationship of stigma to factors associated with functional ability. Additionally, the use of standardised measures allowed for comparison of stigma severity in ME/CFS to other neurological conditions.

Method: A convenience sample of 206 people diagnosed with ME/CFS completed mailed or online self-report standardised measures of stigma, health, ability to participate in social roles and activities, and their satisfaction with this ability. Findings were compared to published data for three neurological conditions.

Results: Stigma scores were significantly correlated (p < .0001) with all self-report health and functional measures (range: −.30 to −.42). The ME/CFS sample reported higher levels of stigma (d = 1.30) and lower levels of health (d = 1.86–2.16) and functioning (d = 1.63) than the comparison conditions.

Conclusions: Consistent with studies over the last two decades, people with ME/CFS report higher levels of stigma when compared to the other conditions. The stigma is not just associated with health but also with specific measures of functional ability.

Source: Don M. Baken,Shane T. Harvey,David L. Bimler &Kirsty J. Ross., Stigma in Myalgic Encephalomyelitis and its association with functioning. Fatigue: Biomedicine, Health & Behavior Vol. 6, Iss. 1, 2018.  http://www.tandfonline.com/action/showCitFormats?doi=10.1080%2F21641846.2018.1419553

Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: implications for management

Abstract:

OBJECTIVES: To establish the relationship between the functional impairment experienced by Chronic fatigue syndrome (CFS) patients and the symptoms frequently experienced by those with CFS; specifically cognitive impairment, fatigue and orthostatic symptoms.

DESIGN: Cross sectional questionnaire survey.

SETTING: Specialist CFS Clinical Service.

SUBJECTS: Ninety-nine Fukuda diagnosed CFS and 64-matched controls.

MAIN OUTCOME MEASURES: Symptom and functional assessment tools completed and returned by post included; PROMIS HAQ (Patient-Reported Outcomes Measurement Information System, Health Assessment Questionnaire), CFQ (Cognitive Failures Questionnaire), FIS (Fatigue Impact Scale) and OGS (Orthostatic Grading Scale) assessment tools.

RESULTS: CFS patients experience greater functional impairment than controls [mean (95% CI) PROMIS HAQ scores CFS 36 (31-42) vs. controls 6 (2-10); P < 0.0001], especially in the functional domains of activities and reach. Poorer functional ability impairment is significantly associated with greater cognitive impairment (P = 0.0002, r = 0.4), fatigue (P < 0.0001, r = 0.5) and orthostatic symptoms (P < 0.0001, r = 0.6). However, only orthostatic symptoms (OGS) independently associated with functional impairment (beta = 0.4, P = 0.01).

CONCLUSION: Treatment of orthostatic symptoms in CFS has the potential to improve functional capacity and so improve quality of life.

 

Source: Costigan A, Elliott C, McDonald C, Newton JL. Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: implications for management. QJM. 2010 Aug;103(8):589-95. doi: 10.1093/qjmed/hcq094. Epub 2010 Jun 9. http://qjmed.oxfordjournals.org/content/103/8/589.long (Full article)

 

Functional incapacity and physical and psychological symptoms: how they interconnect in chronic fatigue syndrome

Abstract:

BACKGROUND: It has been argued that perceived functional incapacity might be a primary characteristic of chronic fatigue syndrome (CFS) and could be explained by physical symptoms. If so, it could be expected to be closely associated with physical, but not psychological symptoms. The study tests this hypothesis.

SAMPLING AND METHODS: The sample consisted of 73 patients, with a diagnosis of CFS according to the Oxford criteria, randomly selected from clinics in the Departments of Immunology and Psychiatry at St. Bartholomew’s Hospital, London. The degree of fatigue experienced by patients was assessed using the Chalder Fatigue Questionnaire and a visual analogue scale. Self-rated instruments were used to measure physical and social functioning, quality of life, and physical and psychological symptoms.

RESULTS: Principal-component analysis of all scale scores revealed 2 distinct components, explaining 53% of the total variance. One component was characterized by psychological symptoms and generic quality of life indicators, whilst the other component was made up of physical symptoms, social and physical functioning and indicators of fatigue.

CONCLUSIONS: The findings suggest that perceived functional incapacity is a primary characteristic of CFS, which is manifested and/or explained by physical symptoms.

(c) 2008 S. Karger AG, Basel.

 

Source: Priebe S, Fakhoury WK, Henningsen P. Functional incapacity and physical and psychological symptoms: how they interconnect in chronic fatigue syndrome. Psychopathology. 2008;41(6):339-45. doi: 10.1159/000152375. Epub 2008 Sep 3. https://www.ncbi.nlm.nih.gov/pubmed/18765959

 

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

 

Functional status, neuropsychological functioning, and mood in chronic fatigue syndrome (CFS): relationship to psychiatric disorder

Abstract:

Individuals with chronic fatigue syndrome (CFS) face chronic physical debilitation, reduced neuropsychological functioning, and changes in emotional well-being that significantly detract from quality of life. The role of psychiatric disturbance in reducing quality of life in CFS remains unclear. In the current investigation, the role of psychiatric status in reducing health-related quality of life in CFS was examined.

Four subject groups were compared on measures of functional well-being, mood, and neuropsychological status: individuals with CFS and no history of psychiatric illness, individuals who had current symptoms of psychiatric illness that began after their CFS diagnosis, individuals who had current symptoms of psychiatric illness that began before their CFS diagnosis, and a healthy sedentary control group.

Overall, it was found that individuals with CFS suffer from profound physical impairment. Concurrent psychiatric illness, however, did not adversely affect physical functional capacity. Physical functional capacity was not worse in individuals with a concurrent psychiatric illness. As expected, concurrent psychiatric illness was found to reduce emotional well-being. Moreover, individuals with a psychiatric illness that predated the onset of CFS suffered the greatest emotional distress. Thus, an individual’s psychiatric history should be considered when attempting to understand the factors maintaining disability in CFS.

 

Source: Tiersky LA, Matheis RJ, Deluca J, Lange G, Natelson BH. Functional status, neuropsychological functioning, and mood in chronic fatigue syndrome (CFS): relationship to psychiatric disorder. J Nerv Ment Dis. 2003 May;191(5):324-31. http://www.ncbi.nlm.nih.gov/pubmed/12819552

 

Subclassifying chronic fatigue syndrome through exercise testing

Abstract:

PURPOSE: The purpose of this study was to examine physiological responses of persons with chronic fatigue syndrome (CFS) to a graded exercise test.

METHODS: Cardiopulmonary exercise tests were performed on 189 patients diagnosed with CFS. Based on values for peak oxygen consumption, patients were assigned to one of four impairment categories (none, mild, moderate, and severe), using American Medical Association (AMA) guidelines. A one-way MANOVA was used to determine differences between impairment categories for the dependent variables of age, body mass index, percentage of predicted [OV0312]O(2), resting and peak heart rates, resting and peak systolic blood pressure, respiratory quotient (RQ), and rating of perceived exertion.

RESULTS: Significant differences were found between each impairment level for percentage of predicted [OV0312]O(2) and peak heart rate. Peak systolic blood pressure values for the “moderate,” and “severe” groups differed significantly from each other and both other groups. The more impaired groups had lower values. The no impairment group had a significantly higher peak RQ than each of the other impairment levels (all P < 0.001). Peak [OV0312]O(2) values were less than predicted for all groups. Compared with the males, the women achieved actual values for peak [OV0312]O(2) that were closer to their predicted values.

CONCLUSION: Despite a common diagnosis, the functional capacity of CFS patients varies greatly. Stratifying patients by function allows for a more meaningful interpretation of the responses to exercise and may enable differential diagnosis between subsets of CFS patients.

Comment in: Physiological factors limiting exercise performance in CFS. [Med Sci Sports Exerc. 2004]

 

Source: Vanness JM, Snell CR, Strayer DR, Dempsey L 4th, Stevens SR. Subclassifying chronic fatigue syndrome through exercise testing. Med Sci Sports Exerc. 2003 Jun;35(6):908-13. http://www.ncbi.nlm.nih.gov/pubmed/12783037

 

Psychiatric morbidity in the chronic fatigue syndrome: are patients with personality disorder more physically impaired?

Abstract:

OBJECTIVE: The long-term consequences of chronic fatigue syndrome (CFS) include substantial impairment in physical functioning and high levels of work disability. In the absence of a medical explanation for this impairment, some have speculated that it may be due to comorbid psychiatric illness or personality disorder. We addressed this possibility by comparing the functional status of three CFS groups: no psychiatric diagnosis, psychiatric illness only, psychiatric illness and personality disorder. A second aim of the study was to determine whether a continuous measure of psychological distress could provide a better account of impairment than psychiatric diagnosis.

METHOD: The study sample consisted of 84 consecutive female referrals with CFS. All participants satisfied the case definition and completed an assessment protocol consisting of: physical examination, psychiatric interview and self-report questionnaires.

RESULTS: Psychiatric illness, either alone or in combination with a comorbid personality disorder, was not associated with physical impairment or disability in female participants. A regression model of physical functioning found that psychological distress accounted for 6% and symptom severity for 41% of the variance (P=.06 and <.01, respectively). In the case of disability, the corresponding percentages were 2% and 18% (NS and P<.01, respectively). The modest effects of psychological distress could not be attributed to symptom severity.

CONCLUSIONS: Although psychiatric illness and personality disorder was prevalent, neither could explain the effects of CFS on physical functioning and disability. As yet, there is no psychological or medical explanation for the behavioral consequences of CFS.

 

Source: Ciccone DS, Busichio K, Vickroy M, Natelson BH. Psychiatric morbidity in the chronic fatigue syndrome: are patients with personality disorder more physically impaired? J Psychosom Res. 2003 May;54(5):445-52. http://www.ncbi.nlm.nih.gov/pubmed/12726901