The use of mixed methods in studying a chronic illness

Abstract:

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches.

In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness.

Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

 

Source: Jason LA, Reed J. The use of mixed methods in studying a chronic illness. Health Psychol Behav Med. 2015;3(1):40-51. Epub 2015 Jan 9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831644/ (Full article)

 

Functional level of patients with chronic fatigue syndrome reporting use of alternative vs. traditional treatments

Abstract:

BACKGROUND: Use of complementary and alternative medicine (CAM) is common among patients with chronic fatigue syndrome (CFS), but whether it is viewed as more or less effective than traditional medicine is unclear.

PURPOSE: To evaluate patients’ level of functioning based on the types of treatments they report using (i.e., traditional-only, CAM-only, or a combination of both).

METHODS: Participants were recruited from physician referrals and media sources (newspaper, support groups), and 97 participants were retained for this analysis. Based on self-report, individuals were divided into three groups: using CAM-only (N=27), traditional medicine-only (N=22), or a combination of both treatments (N=58).

RESULTS: Social functioning was significant (p<.01), with post-hoc analyses indicating significantly better social functioning for individuals taking CAM-only in comparison to patients using traditional-only or a combination of traditional and CAM treatments. Significantly fewer participants (p<.01) using CAM-only had a current psychiatric diagnosis.

CONCLUSIONS: These findings suggest using CAM-only treatments in CFS is associated with higher social functioning and fewer current psychiatric diagnoses. The results support the need for research to fully evaluate how CAM may affect functioning among individuals with CFS.

 

Source: Wise S, Jantke R, Brown A, Jason LA. Functional level of patients with chronic fatigue syndrome reporting use of alternative vs. traditional treatments. Fatigue. 2015;3(4):235-240. Epub 2015 Oct 22. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830425/ (Full article)

 

Variability in Symptoms Complicates Utility of Case Definitions

Abstract:

BACKGROUND: Ambiguities in case definitions have created difficulties in replicating findings and estimating the prevalence rates for chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME).

PURPOSE: The current study examined differences in occurrence rates for CFS and ME cardinal symptoms (i.e. post-exertional malaise, unrefreshing sleep, and neurocognitive deficits).

RESULTS: Findings indicated that there is a wide range of occurrence rates on critical symptoms of the case definition, suggesting that either the types of patients recruited differ in various settings or the questions assessing core symptoms vary in their wording or criteria among different researchers.

CONCLUSIONS: The polythetic nature of the case definition may contribute to the wide ranges of symptom occurrence that was found. In order to increase assessed reliability of the symptoms and case definitions, there is a need to better standardize data collection methods and operationalization of symptoms. This solution would reduce the heterogeneity often seen in populations of CFS patients.

 

Source: McManimen SL, Jason LA, Williams YJ. Variability in Symptoms Complicates Utility of Case Definitions. Fatigue. 2015;3(3):164-172. Epub 2015 May 12. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831632/ (Full article)

 

Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

Considerable debate surrounds the search for the defining features of patients with Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions were created through clinical consensus. Failure to operationalize these case definitions has led to considerable variability in the identification of patients. In addition, some case definitions (e.g., Fukuda et al., 1994) do not require cardinal symptoms of this illness, where as other case definitions do require core symptoms of this illness (Carruthers et al., 2003, 2011), and these latter case criteria appear to identify a more impaired group of patients.

 

Criterion variance is most likely to occur when operationally explicit criteria do not exist for diagnostic categories (Spitzer, Endicott, & Robins, 1978), or when there are varying criteria for contrasting case definitions, which is an impediment to the research in this field. To deal with this problem, it is possible to differentiate those that meet more loosely defined criteria from those that are more narrowly and defined, thus differentiating CFS from ME.

In order to progress the search for biological markers and effective treatments, essential features need to be operationalized and broadly used in order to increase the probability that individuals included in samples have the same underlying illness.

 

Source: Jason LA, Sunnquist M, Brown A, Reed J. Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. J Hum Behav Soc Environ. 2015;25(6):657-674. Epub 2015 May 6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817848/ (Full article)

 

Test-Retest Reliability of the DePaul Symptom Questionnaire

Abstract:

BACKGROUND: The DePaul Symptom Questionnaire (DSQ) was developed to provide a structured approach for collecting standardized symptomatology and health history information to allow researchers and clinicians to determine whether a patient meets the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), myalgic encephalomyelitis (ME), and/or chronic fatigue syndrome (CFS).

PURPOSE: The purpose of this study was to examine the test-retest reliability of the DSQ.

METHODS: Test-retest reliability of the measure was examined with a sample of 26 adults self-identifying as having either ME/CFS, ME and/or CFS and 25 adults who did not self-identify as having these illnesses and were otherwise healthy controls.

RESULTS: Overall, the majority of items on the DSQ exhibited good to excellent test-retest reliability, with Pearson’s or kappa correlation coefficients that were 0.70 or higher.

CONCLUSIONS: Thus, the present study suggests that the DSQ is a reliable diagnostic measure that can provide a standardized way of examining illness constructs and symptomatology among patients who identify as having ME/CFS, ME and/or CFS.

 

Source: Jason LA, So S, Brown AA, Sunnquist M, Evans M. Test-Retest Reliability of the DePaul Symptom Questionnaire. Fatigue. 2015 Jan 1;3(1):16-32. Epub 2015 Jan 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4788471/ (Full article)

 

Chronic Fatigue Syndrome: The Current Status and Future Potentials of Emerging Biomarkers

Abstract:

Chronic fatigue syndrome (CFS) remains an incompletely characterized illness, in part due to controversy regarding its definition, biological basis and diagnosis. Biomarkers are objective measures that may lead to improvements in our understanding of CFS by providing a more coherent and consistent approach to study, diagnosis and treatment of the illness. Such metrics may allow us to distinguish between CFS subtypes – each defined by characteristic biomarkers – currently conflated under the single, heterogeneous condition of CFS. These delineations, in turn, may guide more granular, focused, and targeted treatment strategies based on more precise characterizations of the illness. Here, we review potential CFS biomarkers related to neurological and immunological components of the illness, and discuss how these biomarkers may be used to move the field of CFS forward, emphasizing clinical utility and potential routes of future research.

 

Source: Fischer DB, William AH, Strauss AC, Unger ER, Jason L, Marshall GD Jr, Dimitrakoff JD. Chronic Fatigue Syndrome: The Current Status and Future Potentials of Emerging Biomarkers. Fatigue. 2014 Jun 1;2(2):93-109. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4052724/ (Full article)

 

Comparing and Contrasting Consensus versus Empirical Domains

Abstract:

BACKGROUND: Since the publication of the CFS case definition [1], there have been a number of other criteria proposed including the Canadian Consensus Criteria [2] and the Myalgic Encephalomyelitis: International Consensus Criteria. [3].

PURPOSE: The current study compared these domains that were developed through consensus methods to one obtained through more empirical approaches using factor analysis.

METHODS: Using data mining, we compared and contrasted fundamental features of consensus-based criteria versus empirical latent factors. In general, these approaches found the domain of Fatigue/Post-exertional malaise as best differentiating patients from controls.

RESULTS: Findings indicated that the Fukuda et al. criteria had the worst sensitivity and specificity.

CONCLUSIONS: These outcomes might help both theorists and researchers better determine which fundamental domains to be used for the case definition.

 

Source: Jason LA, Kot B, Sunnquist M, Brown A, Reed J, Furst J, Newton JL, Strand EB, Vernon SD. Comparing and Contrasting Consensus versus Empirical Domains. Fatigue. 2014 Apr 1;3(2):63-74. Epub 2015 Aug 26. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4788637/ (Full article)

 

Predictors of Post-Infectious Chronic Fatigue Syndrome in Adolescents

Abstract:

This study focused on identifying risk factors for adolescent post-infectious chronic fatigue syndrome (CFS), utilizing a prospective, nested case-control longitudinal design in which over 300 teenagers with Infectious Mononucleosis (IM) were identified through primary care sites and followed.

Baseline variables that were gathered several months following IM, included autonomic symptoms, days in bed since IM, perceived stress, stressful life events, family stress, difficulty functioning and attending school, family stress and psychiatric disorders. A number of variables were predictors of post-infectious CFS at 6 months; however, when autonomic symptoms were used as a control variable, only days spent in bed since mono was a significant predictor. Step-wise logistic regression findings indicated that baseline autonomic symptoms as well as days spent in bed since mono, which reflect the severity of illness, were the only significant predictors of those who met CFS criteria at 6 months.

 

Source: Jason LA, Katz BZ, Shiraishi Y, Mears CJ, Im Y, Taylor R. Predictors of Post-Infectious Chronic Fatigue Syndrome in Adolescents. Health Psychol Behav Med. 2014 Jan 1;2(1):41-51. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956649/ (Full article)

 

Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis

Abstract:

BACKGROUND: Considerable controversy has transpired regarding the core features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions differ in the number and types of symptoms required. This ambiguity impedes the search for biological markers and effective treatments.

PURPOSE: This study sought to empirically operationalize symptom criteria and identify which symptoms best characterize the illness.

METHODS: Patients (n=236) and controls (n=86) completed the DePaul Symptom Questionnaire, rating the frequency and severity of 54 symptoms. Responses were compared to determine the threshold of frequency/severity ratings that best distinguished patients from controls. A Classification and Regression Tree (CART) algorithm was used to identify the combination of symptoms that most accurately classified patients and controls.

RESULTS: A third of controls met the symptom criteria of a common CFS case definition when just symptom presence was required; however, when frequency/severity requirements were raised, only 5% met criteria. Employing these higher frequency/severity requirements, the CART algorithm identified three symptoms that accurately classified 95.4% of participants as patient or control: fatigue/extreme tiredness, inability to focus on multiple things simultaneously, and experiencing a dead/heavy feeling after starting to exercise.

CONCLUSIONS: Minimum frequency/severity thresholds should be specified in symptom criteria to reduce the likelihood of misclassification. Future research should continue to seek empirical support of the core symptoms of ME and CFS to further progress the search for biological markers and treatments.

 

Source: Jason LA, Sunnquist M, Brown A, Evans M, Vernon SD, Furst J, Simonis V. Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis. Fatigue. 2014 Jan 1;2(1):40-56. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912876/ (Full article)

 

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis

Abstract:

Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis. A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues’ chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues’ criteria. The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology.

© The Author(s) 2014.

 

Source: Jason LA, Sunnquist M, Brown A, Evans M, Newton JL. Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis. J Health Psychol. 2016 Jan;21(1):3-15. doi: 10.1177/1359105313520335. Epub 2014 Feb 7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125561/ (Full article)