Tag: activity impairment

Development and measurement properties of the PEM/PESE activity questionnaire (PAQ)

Abstract:

Background: Existing instruments often are inappropriate to measure the effects of post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE) on activities of daily living (ADLs). A validated questionnaire to measure self-reported ability with ADLs would advance research and clinical practice in conditions like myalgic encephalomyelitis and Long Covid.

Objective: Determine the measurement properties of the PEM/PESE Activity Questionnaire (PAQ).

Methods: The PAQ is adapted from the Patient Specific Functional Scale. Respondents rated three self-selected ADLs on two 0-100 scales, including current performance compared to (1) a ‘good day’ and (2) before illness. Respondents provided a Burden of Functioning rating on a 0-100 scale, anchored at 0 being the activity took “No time, effort, and resources at all” and 10 being “All of my time, effort, and resources.” Respondents took the PAQ twice, completing a demographic questionnaire after the first PAQ and before the second PAQ. Descriptive statistics and intraclass correlation coefficients were calculated for each scale to assess test-retest reliability. Minimum detectable change outside the 95% confidence interval (MDC95) was calculated. Ceiling and floor effects were determined when the MDC95 for average and function scores crossed 0 and 100, respectively.

Results: n = 981 responses were recorded, including n = 675 complete surveys. Test-retest reliability was generally fair to excellent, depending on function and scale. MDC95 values generally indicated scale responsiveness. Ceiling and floor effects were noted infrequently for specific functions.

Conclusion: The PAQ is valid, reliable, and sensitive. Additional research may explore measurement properties involving functions that were infrequently selected in this sample.

Source: Davenport TE, Stevens SR, Stevens J, Snell CR, Van Ness JM. Development and measurement properties of the PEM/PESE activity questionnaire (PAQ). Work. 2023 Mar 13. doi: 10.3233/WOR-220553. Epub ahead of print. PMID: 36938768. https://content.iospress.com/articles/work/wor220553 (Full text)

Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Aim: To identify activities which people with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) report are impacted by their condition, and evaluate the ability of measures of function used by National Health Service (NHS) ME/CFS Services to represent these experiences.

Method: 122 participants completed ME/CFS Service questionnaires reporting activities that they had reduced or stopped doing, as well as Patient Reported Outcome Measures (PROMs). These data were coded using the International Classification of Functioning, Disability and Health (ICF) using established linking rules. Matrices identified the agreement rate between the outcome measures and the participant-generated list. Activities which could not be coded against the ICF were grouped using content analysis.

Results: Responses from participants related to codes from nine subsections of the ICF. The PROMs used by the ME/CFS service had agreement rates between 58% and 62.5% with the participant-generated list. The content analysis identified a range of activities that were meaningful to participants that they could no longer do. These included holidays and day trips, accessing the community independently, and sustaining activity into the evening. These were not captured in either the ICF or the service’s outcome measures.

Conclusion: The list generated by participants referred to a wide range of activities, including some not captured by the ICF. Comparison against the outcome measures suggests that the measures used in many NHS ME/CFS services nationally capture patients’ experiences moderately well. However, there are activities that patients value that are not captured by these measures.

Source: Bethan Jones, Corin Bourne & Peter Gladwell. Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2023.2175579 (Full text)

Isolated diastolic dysfunction of the myocardium and its response to CoQ10 treatment

Abstract:

Symptoms of fatigue and activity impairment, atypical precordial pain, and cardiac arrhythmia frequently precede by years the development of congestive heart failure.

Of 115 patients with these symptoms, 60 were diagnosed as having hypertensive cardiovascular disease, 27 mitral valve prolapse syndrome, and 28 chronic fatigue syndrome. These symptoms are common with diastolic dysfunction, and diastolic function is energy dependent. All patients had blood pressure, clinical status, coenzyme Q10 (CoQ10) blood levels and echocardiographic measurement of diastolic function, systolic function, and myocardial thickness recorded before and after CoQ10 replacement.

At control, 63 patients were functional class III and 54 class II; all showed diastolic dysfunction; the mean CoQ10 blood level was 0.855 micrograms/ml; 65%, 15%, and 7% showed significant myocardial hypertrophy, and 87%, 30%, and 11% had elevated blood pressure readings in hypertensive disease, mitral valve prolapse and chronic fatigue syndrome respectively. Except for higher blood pressure levels and more myocardial thickening in the hypertensive patients, there was little difference between the three groups.

CoQ10 administration resulted in improvement in all; reduction in high blood pressure in 80%, and improvement in diastolic function in all patients with follow-up echocardiograms to date; a reduction in myocardial thickness in 53% of hypertensives and 36% of the combined prolapse and fatigue syndrome groups; and a reduced fractional shortening in those high at control and an increase in those initially low.(ABSTRACT TRUNCATED AT 250 WORDS)

 

Source: Langsjoen PH, Langsjoen PH, Folkers K. Isolated diastolic dysfunction of the myocardium and its response to CoQ10 treatment. Clin Investig. 1993;71(8 Suppl):S140-4. http://www.ncbi.nlm.nih.gov/pubmed/8241699