Tag: Jason

Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments

Abstract:

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS.

Methods: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as ‘bolt-ons’ to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.

Results: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.

Conclusions: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.

Source: Orji NC, Cox IA, Jason LA, Chen G, Zhao T, Rogerson MJ, Kelly RM, Wills K, Hensher M, Palmer AJ, de Graaff B, Campbell JA. Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments. Qual Life Res. 2023 Aug 10. doi: 10.1007/s11136-023-03498-8. Epub ahead of print. PMID: 37561337. https://link.springer.com/article/10.1007/s11136-023-03498-8 (Full text)

Comparing Frequency and Severity Ratings for ME/CFS versus Controls

Abstract:

Most questionnaires for somatic symptoms focus on occurrence, frequency, or severity, and in doing so, they might not be able to comprehensively assess the burden that symptoms present to patients. For example, a symptom might occur at a high frequency but only a minimal severity, so that it is less likely to be a burden on a patient; whereas a symptom that has both a high frequency and severity is more likely to be negatively impacting a patient.
Study 1 examined frequency and severity scores for classic Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms among patients with ME/CFS versus a control group. Findings in Study 1 indicate there were more frequency/severity discrepancies for individuals with ME/CFS versus the control group. Study 1 concluded that collecting data on both measures of symptom burden provides unique indicators that can better assess the burden of the symptoms on patients.
In a separate data set, Study 2 reported reliability data on slight differences in the time period and the way the severity was assessed. Study 2 findings indicated high levels of reliability for these changes in the time period and the way questions were asked. These studies provide important psychometric properties that could lead to more reliable and valid assessments of patients with post-viral illnesses.
Source: Jason LA, Benner S, Hansel N. Comparing Frequency and Severity Ratings for ME/CFS versus Controls. Psych. 2023; 5(3):662-669. https://doi.org/10.3390/psych5030042 https://www.mdpi.com/2624-8611/5/3/42 (Full text)

Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

BACKGROUND: The literature is mixed about the occurrence of alcohol intolerance among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Surveys that asked respondents with ME/CFS whether they experienced alcohol intolerance within a recent time frame might produce inaccurate results because respondents may indicate that the symptom was not present if they avoid alcohol due to alcohol intolerance.

AIM: To overcome this methodologic problem, participants in the current study were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol.

METHODS: The instrument used was a validated scale called the DePaul symptom questionnaire. Independent t-tests were performed among the alcohol intolerant or not alcohol intolerant group. The alcohol intolerant group had 208 participants, and the not alcohol intolerant group had 96 participants.

RESULTS: Using specially designed questions to properly identify those with alcohol intolerance, those who experienced alcohol intolerance vs those who did not experience alcohol intolerance experienced more frequent/severe symptoms and domains. In addition, using a multiple regression analysis, the orthostatic intolerance symptom domain was related to alcohol intolerance.

CONCLUSION: The findings from the current study indicated that those with ME/CFS are more likely to experience alcohol intolerance. In addition, those with this symptom have more overall symptoms than those without alcohol intolerance.

Source: Maciuch J, Jason LA. Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome. World J Neurol 2023; 9(3): 17-27 [DOI: 10.5316/wjn.v9.i3.17] https://www.wjgnet.com/2218-6212/full/v9/i3/17.htm (Full text)

Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway

Abstract:

Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients’ experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise.

We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group.

The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and “do-no-harm” should be a guiding principle in all practice.

Source: Kielland A, Liu J, Jason LA. Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway. J Health Psychol. 2023 Apr 28:13591053231169191. doi: 10.1177/13591053231169191. Epub ahead of print. PMID: 37114822. https://journals.sagepub.com/doi/10.1177/13591053231169191 (Full text)

Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood chronic illness with many case definitions that disagree on key symptoms, including hypersensitivities to noise and lights. The aim of the current study was to understand the prevalence rates and characteristics of these symptoms amongst people with ME/CFS and to compare them to people with another chronic illness, multiple sclerosis (MS).

International datasets consisting of 2,240 people with either ME/CFS or MS have completed the DePaul Symptom Questionnaire (DSQ) and the Short Form Health Survey Questionnaire (SF-36). Hypersensitivities to noise and lights were indicated from items on the DSQ, and participants were analyzed against DSQ and SF-36 subscales through a multivariate analysis of covariance.

There were significantly higher percentages of people with hypersensitivities in the ME/CFS sample compared to the MS sample. Regardless of illness, participants that exhibited both hypersensitivities reported greater symptomology than those without hypersensitivities. Healthcare providers and researchers should consider these symptoms when developing treatment plans and evaluating ME/CFS case diagnostic criteria.

Source: Maeda KI, Islam MF, Conroy KE, Jason L. Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis. Psychol Health Med. 2023 Mar 28:1-12. doi: 10.1080/13548506.2023.2195670. Epub ahead of print. PMID: 36977713. https://pubmed.ncbi.nlm.nih.gov/36977713/

Predictors of impaired functioning among long COVID patients

Abstract:

Background: There is limited information on what acute factors predict more long-term symptoms from COVID-19.

Objective: Our objective was to conduct an exploratory factor analysis of self-reported symptoms at two time points of Long COVID-19.

Methods: Data from patients with Long COVID-19 were collected at the initial two weeks of contracting SARS CoV-2 and the most recent two weeks, with a mean duration of 21.7 weeks between the two-time points. At time point 2, participants also complete the Coronavirus Impact Scale (CIS), measuring how the COVID-19 pandemic affected various dimensions of their lives (e.g., routine, access to medical care, social/family support, etc.).

Results: At time 1, a three-factor model emerged consisting of Cognitive Dysfunction, Autonomic Dysfunction and Gastrointestinal Dysfunction. The analysis of time 2 resulted in a three-factor model consisting of cognitive dysfunction, autonomic dysfunction, and post-exertional malaise. Using factor scores from time 1, the Autonomic Dysfunction and the Gastrointestinal Dysfunction factor scores significantly predicted the CIS summary score at time two. In addition, the same two factor scores at time 1 predicted the occurrence of myalgic encephalomyelitis/chronic fatigue syndrome at time 2.

Conclusion: As Cognitive and Autonomic Dysfunction emerged as factors for both time points, suggesting health care workers might want to pay particular attention to these factors that might be related to later symptoms and difficulties with returning to pre-illness family life and work functioning.

Source: Jason LA, Dorri JA. Predictors of impaired functioning among long COVID patients. Work. 2023 Mar 8. doi: 10.3233/WOR-220428. Epub ahead of print. PMID: 36911958. https://content.iospress.com/articles/work/wor220428 (Full text)

Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations.

Objective: The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS.

Method: Patients provided data regarding symptoms of ME/CFS they may have experienced during childhood through a popular community blog forum, with participants interacting via blog comments in real-time and across various geographical locations.

Results: Descriptive analyses indicated that roughly 43% of adult survey participants reported having developed ME/CFS prior to age 18. A standard content analysis of patient blog commentary revealed several themes, such as poor mental health, family pattern/history, healthy childhood preceding sick adulthood, feeling misunderstood, lack of clarity until adulthood, sharing of resources, poor school functioning, isolation/poor social supports, and coping mechanisms.

Conclusion: There are unique benefits and insights that can be used by investigators who collaborate with patient organizations as a means of better understanding ME/CFS illness severity, presentation, and lived experiences.

Source: Johnson M, Torres C, Watts-Rich H, Jason L. Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary. Work. 2023 Mar 9. doi: 10.3233/WOR-220484. Epub ahead of print. PMID: 36911960. https://content.iospress.com/articles/work/wor220484 (Full text)

Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences

Abstract:

There have been numerous iterations of naming convention specified for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). As health care turns to “big data” analytics to gain insights, the Google Trends database was mined to ascertain worldwide trends of public interest in several ME- and CFS-related search categories between 2004 and 2019.
Time series analysis revealed that though “Chronic Fatigue Syndrome” remains the predominant search category in the ME and CFS field, the interest index declined at a rate of 2.77 per month during the 15-year study period. In the same time period, the interest index in “ME/CFS Hybrid” terms increased at a rate of 3.20 per month. Potential causal mechanisms for these trends and implications for patient sentiment analysis are discussed.
Source: Bhatia, S., & Jason, L. A. (2023). Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences. Journal of Disability Policy Studies, 0(0). https://doi.org/10.1177/10442073231154027

An Exploratory Factor Analysis of Long Covid

Abstract:
An exploratory factor analysis (EFA) can provide a window into the latent dimensions of a disease, such as Long COVID.
Discovering the latent factors of Long COVID enables researchers and clinicians to better conceptualize, study and treat
this disease.
In this study, participants were recruited from social media sites dedicated to COVID and Long COVID. Among the 480 participants, those who completed at least 90% of the survey, reported symptoms for two or more months since COVID-19 symptom onset, and had not been hospitalized for COVID were used in the EFA. The mean duration since initial symptom onset was 74.0 (37.3) weeks.
A new questionnaire called The DePaul Symptom Questionnaire-COVID was used to assess self-reports of the frequency and severity of 38 Long COVID symptoms experienced over the most recent month. The most burdensome symptoms were “Symptoms that get worse after physical or mental activities (also known as Post-Exertional Malaise),” “Fatigue/extreme tiredness,” “Difficulty thinking and/or concentrating,” “Sleep problems,” and “Muscle aches.” The EFA resulted in a three-factor model with factors labeled General, PEM/Fatigue/Cognitive Dysfunction, and Psychological, consisting of 16, 6, and 3 items respectively (25 items in total).
The reliability of the items in the EFA was .90 using a split-half reliability test. Finally, participant self-reported level of
functional impairment was analyzed across the three EFA factors. Interpretations and applications to research and
practice are provided.
Source: Joseph A. Dorri1 and Leonard A. Jason. An exploratory factor analysis of long covid. Central Asian Journal of Medical Hypotheses and Ethics. 2/14/23 https://www.researchgate.net/publication/368502945_AN_EXPLORATORY_FACTOR_ANALYSIS_OF_LONG_COVID (Full text)

Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort

Abstract:

Background: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a complex, heterogenous disease. It has been suggested that subgroups of people with ME/CFS exist, displaying a specific cluster of symptoms. Investigating symptom-based clusters may provide a better understanding of ME/CFS. Therefore, this study aimed to identify clusters in people with ME/CFS based on the frequency and severity of symptoms.

Methods: Members of the Dutch ME/CFS Foundation completed an online version of the DePaul Symptom Questionnaire version 2. Self-organizing maps (SOM) were used to generate symptom-based clusters using severity and frequency scores of the 79 measured symptoms. An extra dataset (n = 252) was used to assess the reproducibility of the symptom-based clusters.

Results: Data of 337 participants were analyzed (82% female; median (IQR) age: 55 (44–63) years). 45 clusters were identified, of which 13 clusters included ≥ 10 patients. Fatigue and PEM were reported across all of the symptom-based clusters, but the clusters were defined by a distinct pattern of symptom severity and frequency, as well as differences in clinical characteristics. 11% of the patients could not be classified into one of the 13 largest clusters. Applying the trained SOM to validation sample, resulted in a similar symptom pattern compared the Dutch dataset.

Conclusion: This study demonstrated that in ME/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME/CFS sample. Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options.

Source: Vaes, A.W., Van Herck, M., Deng, Q. et al. Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort. J Transl Med 21, 112 (2023). https://doi.org/10.1186/s12967-023-03946-6 https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-03946-6 (Full text)