self-report measures – American ME and CFS Society

An exploratory study of discrepancies between objective and subjective measurement of the physical activity level in female patients with chronic fatigue syndrome

Abstract:

Objective: To explore the ability of a self-report activity diary to measure the physical activity level (PAL) in female patients with chronic fatigue syndrome (CFS) and whether illness-related complaints, health-related quality of life domains (HRQOL) or demographic factors are associated with discrepancies between self-reported and objectively measured PAL.

Methods: Sixty-six patients with CFS, recruited from the chronic fatigue clinic of a university hospital, and twenty matched healthy controls wore an accelerometer (Actical) for six consecutive days and registered their activities in an activity diary in the same period. Participants’ demographic data was collected and all subjects completed the CFS Symptom List (illness-related complaints) daily and Short-Form-36 (HRQOL domains) during the first and second appointment.

Results: A significant, but weak association between the activity diary and Actical was present in patients with CFS (rs = 0.376 and rs = 0.352; p < 0.001) and a moderately strong association in healthy controls (rs = 0.605; and rs = 0.644; p < 0.001) between week and weekend days, respectively. A linear mixed model identified a negative association between age and the discrepancy between the self-reported and objective measure of PA in both patients with CFS and healthy controls.

Conclusion: The activity diary showed limited ability to register the PAL in female patients with CFS. The discrepancy between measures was not explained by illness-related complaints, HRQOL domains or demographic factors. The activity diary cannot replace objective activity monitoring measured with an accelerometer, but may provide additional information about the perceived activity.

Source: Vergauwen K, Huijnen IPJ, Smeets RJEM, Kos D, van Eupen I, Nijs J, Meeus M. An exploratory study of discrepancies between objective and subjective measurement of the physical activity level in female patients with chronic fatigue syndrome. J Psychosom Res. 2021 Mar 10;144:110417. doi: 10.1016/j.jpsychores.2021.110417. Epub ahead of print. PMID: 33773330. https://pubmed.ncbi.nlm.nih.gov/33773330/

Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis

Abstract:

OBJECTIVE: Functional somatic syndromes have no laboratory or pathologic abnormalities and so are diagnosed by symptom-based case definitions. However, many studies, including recent ones, have used self-reports of physician diagnosis rather than the case definitions. Our objective was to determine the sensitivities and specificities of self-report of physician diagnosis for chronic fatigue syndrome (CFS), fibromyalgia (FM), irritable bowel syndrome (IBS), panic disorder, and migraine.

METHODS: Each of 312 female patients with incident interstitial cystitis/bladder pain syndrome and matched population-based controls were queried on self-report of physician diagnosis and separately on established case definitions for each of these syndromes.

RESULTS: Using the symptom-based case definitions as standards, we found that self-report of physician diagnosis did not identify 90% of the controls who had CFS, 77% who had FM, 69% who had IBS, 43% who had panic disorder, and 23% who had migraine. In addition, it missed most individuals with multiple syndromes. Findings in one cohort (controls) were confirmed in another (patients with interstitial cystitis/bladder pain syndrome).

CONCLUSIONS: Self-report of physician diagnosis did not identify most of the three most venerable functional somatic syndromes, IBS, FM, and, especially, CFS; nor did it identify substantial minorities of individuals with panic disorder and migraine. Self-report of physician diagnosis was particularly poor in recognizing persons with multiple syndromes. The insensitivity of this diagnostic test has effects on not only prevalence and incidence estimates but also correlates, comorbidities, and case recruitment. To reveal individuals with these syndromes, singly or together, queries of symptoms, not diagnoses, are necessary.

Comment in: Recalling, reporting, and thinking about diagnoses. [Psychosom Med. 2012]

Source: Warren JW, Clauw DJ. Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis. Psychosom Med. 2012 Nov-Dec;74(9):891-5. doi: 10.1097/PSY.0b013e31827264aa. Epub 2012 Oct 15. https://www.ncbi.nlm.nih.gov/pubmed/23071343

Psychopathology and physical activity as predictors of chronic fatigue syndrome in the 1958 british birth cohort: a replication study of the 1946 and 1970 birth cohorts

Abstract:

PURPOSE: In this study, we investigate whether prospective associations between psychopathology, physical activity, and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) observed in the 1946 and 1970 birth cohorts were replicable in the 1958 British birth cohort.

METHODS: Prospective study using the 1958 British birth cohort, which included 98.7% of births from 1 week in March 1958 in England, Wales, and Scotland. The outcome was self-reported CFS/ME by the age of 42 years, at which point 11,419 participants remained in the study. Psychopathology was assessed by the Rutter scales in childhood and the Malaise Inventory in adulthood. Physical activity was reported by the cohort member, mother and teacher in childhood and adulthood.

RESULTS: The prevalence of CFS/ME was 1.0% (95% confidence interval [CI] = 0.9-1.3) and the median age of onset was 34 years. Premorbid psychopathology at 23 years (odds ratio [OR] = 1.85, 95% CI = 1.06-3.22) and 33 years (OR = 2.81, 95% CI = 1.28-6.18) significantly increased the odds of developing CFS/ME, supporting the 1946 cohort findings. Childhood psychopathology, sedentary behavior in childhood, and persistent exercise in adulthood were not associated with CFS/ME.

CONCLUSIONS: In cohort studies premorbid psychopathology in adulthood is a replicated risk marker for CFS/ME, whereas premorbid extremes of physical activity are not.

Source: Goodwin L, White PD, Hotopf M, Stansfeld SA, Clark C. Psychopathology and physical activity as predictors of chronic fatigue syndrome in the 1958 British birth cohort: a replication study of the 1946 and 1970 birth cohorts. Ann Epidemiol. 2011 May;21(5):343-50. doi: 10.1016/j.annepidem.2010.12.003. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3078325/ (Full article)

The use of a symptom “self-report” inventory to evaluate the acceptability and efficacy of a walking program for patients suffering with chronic fatigue syndrome

Abstract:

OBJECTIVES: The purpose of this research was to evaluate the effectiveness of the modality of walking as a management strategy for patients suffering with chronic fatigue syndrome (CFS).

METHODS: Six males and fourteen females with medically diagnosed CFS (CDC, 1994), completed a 12-week walking program. Prior to starting the program subjects underwent an incremental walking exercise test to predetermine their walking intensity. The SCL-90-R symptom “self-report” questionnaire was administered prior to, and at the completion of, the walking program.

RESULTS: At the completion of the 12 weeks of walking, changes in four of the nine SCL-90-R dimensions were significant (somatisation, paranoid ideation, phobic anxiety, and psychoticism). Also significant were the changes in the combination indices, the Global Indices of Distress (GID) and the Positive Symptom Total (PST).

CONCLUSION: This group of CFS subjects, by way of “self-report”, indicated the possibility of an exercise-induced decrease in psychological stress. The walking intervention may have evoked positive changes in their well-being and, furthermore, provided no evidence of any exacerbation in their symptoms.

Source: Coutts R, Weatherby R, Davie A. The use of a symptom “self-report” inventory to evaluate the acceptability and efficacy of a walking program for patients suffering with chronic fatigue syndrome. J Psychosom Res. 2001 Aug;51(2):425-9. http://www.ncbi.nlm.nih.gov/pubmed/11516764

Prolonged fatigue, anxiety and depression: exploring relationships in a primary care sample

Abstract:

OBJECTIVE: While prolonged fatigue states are frequently comorbid with other forms of distress, they are now the subject of independent aetiological and treatment research. The objective of this study was to use principal component analysis to clarify the relationships between proposed measures of prolonged fatigue and anxiety and depression in data obtained from patients attending primary care.

METHOD: Self-report measures of prolonged fatigue and psychological distress (anxiety and depression) were administered to consecutive ambulatory care patients attending primary care.

RESULTS: Data from 1593 subjects were obtained. A two-factor principal component solution (varimax rotation) demonstrated a clear separation between fatigue-related items (Cronbach’s alpha = 0.81) as compared with those items describing anxiety and/or depression (Cronbach’s alpha = 0.95). A four-factor solution produced similar results with two factors describing general psychological distress (contrasting anxiety and depression), with two other factors describing the profiles of mental and physical fatigue.

CONCLUSIONS: The results lend weight to the argument that prolonged fatigue states can be measured independently of conventional notions of anxiety and depression in patients attending primary care. Epidemiological, aetiological and treatment research in psychiatry may need to focus greater attention on such prolonged fatigue states.

Comment in: Response to: ‘Prolonged fatigue, anxiety and depression: exploring relationships in a primary care sample‘. [Aust N Z J Psychiatry. 2000]

Source: Koschera A, Hickie I, Hadzi-Pavlovic D, Wilson A, Lloyd A. Prolonged fatigue, anxiety and depression: exploring relationships in a primary care sample. Aust N Z J Psychiatry. 1999 Aug;33(4):545-52. http://www.ncbi.nlm.nih.gov/pubmed/10483850

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

Chronic fatigue syndrome: assessing symptoms and activity level

Abstract:

Current approaches to the diagnosis and assessment of Chronic Fatigue Syndrome (CFS) rely primarily on scales that measure only the occurrence of various symptoms related to CFS. Such approaches do not provide information on either the severity of symptoms or on fluctuations in symptom severity and activity level that occur over time. As a result, these measures do not reflect the complexities and the interrelations among symptoms. By obscuring the fluctuating nature of CFS and its high variability, current assessment procedures may prevent health care professionals from understanding the complexities of this disease. The present study provides two CFS case studies to illustrate the advantages of using self-reporting rating scales in combination with a device used to measure the frequency and intensity of activity. The implications of this assessment system, which captures the symptom dynamics and variability involved in CFS, are discussed.

Source: Jason LA, King CP, Frankenberry EL, Jordan KM, Tryon WW, Rademaker F, Huang CF. Chronic fatigue syndrome: assessing symptoms and activity level. J Clin Psychol. 1999 Apr;55(4):411-24. http://www.ncbi.nlm.nih.gov/pubmed/10348404

Chronic fatigue and the chronic fatigue syndrome: prevalence in a Pacific Northwest health care system

Abstract:

OBJECTIVES: To investigate the point prevalence of the chronic fatigue syndrome and unexplained debilitating chronic fatigue in a community-based sample of persons and to describe demographic, clinical, and psychosocial differences among those with the chronic fatigue syndrome, those with chronic fatigue, and healthy controls.

DESIGN: Prospective cohort study.

SETTING: A health maintenance organization in Seattle, Washington.

PARTICIPANTS: A random sample of 4000 members of the health maintenance organization was surveyed by mail for the presence of chronic fatigue.

MEASUREMENTS: Persons with chronic fatigue were evaluated using a questionnaire that requested information about medical history and fatigue and related symptoms; validated measures of functional status and psychological distress; a physical examination; and standardized blood tests. A structured psychiatric interview was done in persons who appeared to meet the original Centers for Disease Control and Prevention (CDC) criteria for the chronic fatigue syndrome. Participants completed self-report measures at 12 and 24 months. Those with chronic fatigue were reevaluated in person 1 year after study enrollment.

RESULTS: 3066 (77%) of the 4000 members surveyed responded. Chronic fatigue was reported by 590 persons (19%). Of these, 388 (66%) had a medical or psychiatric condition that could account for the fatigue. Of the 74 persons (37%) with chronic fatigue who were enrolled in the study, only 3 met the CDC criteria for the chronic fatigue syndrome. The remaining 71 persons were designated as having chronic fatigue alone. Seventy-four healthy, age- and sex-matched controls who were drawn from the same sample but who denied having chronic fatigue were also studied. Demographic characteristics were similar in persons with the chronic fatigue syndrome, persons with chronic fatigue alone, and controls. Those with the chronic fatigue syndrome or chronic fatigue alone had more frequent cervical and axillary adenopathy, poorer functional status, and greater psychological distress than controls. Women and minorities were not overrepresented among cases with chronic fatigue.

CONCLUSIONS: Using different assumptions about the likelihood that persons who did not participate in the study had the chronic fatigue syndrome, the estimated crude point prevalence of the syndrome in this community ranged from 75 to 267 cases per 100,000 persons. The point prevalence of chronic fatigue alone was strikingly higher; it ranged from 1775 to 6321 cases per 100,000 persons.

Source: Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Komaroff AL. Chronic fatigue and the chronic fatigue syndrome: prevalence in a Pacific Northwest health care system. Ann Intern Med. 1995 Jul 15;123(2):81-8. http://www.ncbi.nlm.nih.gov/pubmed/7778839