Tag: assessment

How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms

Our study involves collaboration/participation in order to develop culturally sensitive multinational tools for assessing post viral symptoms.

We discuss the creation of questionnaires using patient participation, and the translation of these questionnaires using international collaboration.

Patient engagement in collaboration on the creation and use of these types of instruments is of particular importance for patients who historically have not been true partners in collaborative efforts to understand diseases.

This has occurred for those with the post-viral illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which has generated considerable resentment and estrangement among the patient community.

Our article reviews:

1) why participation of diverse groups/patients is important in the development of instruments to measure key symptoms of ME/CFS,

2) why the ME/CFS group of patients needs to be included specifically (as an example),

and

3) why structured health questionnaires are important/useful.

Our article also has an overall aim of demonstrating collaborative efforts with patients and others on creating multinational scales.

We provide examples of participatory processes used in developing and translating patient-driven instruments so that they can be used in non-English speaking countries.

Our article illustrates how patients and international researchers can be involved in efforts to develop and translate international assessment instruments to validly capture domains of unexplained illness like ME/CFS.

With the onset of another post-viral illness, Long COVID, there is a world-wide need to create valid and culturally sensitive assessment instruments to measure critical symptoms, many of which are similar to ME/CFS.

Source: Leonard A. Jason and Joseph A. Dorri. How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms. The Australian Community Psychologist., Volume 32 No 1  https://psychology.org.au/getmedia/c300a432-c7fd-4f97-9322-ce16429067e4/ac-vol-32(1)-2023-final-draft.pdf#page=63 (Full text)

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)

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)

A Mixed Methods System for the Assessment of Post Exertional Malaise in Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Background A central feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is post exertional malaise (PEM), which is an acute worsening of symptoms after a physical, emotional and/or mental exertion. PEM is also a feature of Long COVID. Dynamic measures of PEM have historically included scaled questionnaires which have not been validated in ME/CFS. To enhance our understanding of PEM and how best to measure it, we conducted semi-structured qualitative interviews (QIs) at the same intervals as Visual Analog Scale (VAS) measures after a Cardiopulmonary Exercise Test (CPET).

Methods Ten ME/CFS and nine healthy volunteers participated in a CPET. For each participant, PEM symptom VAS (7 symptoms) and semi-structured QIs were administered at six timepoints over 72 hours before and after a single CPET. QI data were used to plot the severity of PEM at each time point and identify the self-described most bothersome symptom for each patient. QI data were used to determine the symptom trajectory and peak of PEM. Performance of QI and VAS data were compared to each other using Spearman correlations.

Results QIs documented that each ME/CFS volunteer had a unique PEM experience, with differences noted in the onset, severity, trajectory over time, and most bothersome symptom. No healthy volunteers experienced PEM. Scaled QI data were able to identify PEM peaks and trajectories, even when VAS scales were unable to do so due to known ceiling and floor effects. QI and VAS fatigue data corresponded well prior to exercise (baseline, r=0.7) but poorly at peak PEM (r=0.28) and with the change from baseline to peak (r=0.20). When the most bothersome symptom identified from QIs was used, these correlations improved (r=.0.77, 0.42. and 0.54 respectively) and reduced the observed VAS scale ceiling and floor effects.

Conclusion QIs were able to capture changes in PEM severity and symptom quality over time in all the ME/CFS volunteers, even when VAS scales failed to do so. Information collected from QIs also improved the performance of VAS. Measurement of PEM can be improved by using a quantitative-qualitative mixed model approach.

Disclaimer This research/work/investigator was supported (in part) by the Division of Intramural Research of the National Institutes of Health, NINDS. The content is solely the responsibility of the author(s) and does not necessarily represent the official views of the National Institutes of Health.

Source: Barbara Stussman, Brice Calco, Gina Norato, Angelique Gavin, Snigdha Chigurupati, Avindra Nath, Brian Walitt. A Mixed Methods System for the Assessment of Post Exertional Malaise in Encephalomyelitis/Chronic Fatigue Syndrome. medRxiv 2023.04.24.23288821;  doi: https://doi.org/10.1101/2023.04.24.23288821 https://www.medrxiv.org/content/10.1101/2023.04.24.23288821v1.full-text (Full text)

Clinical History Segment Extraction From Chronic Fatigue Syndrome Assessments to Model Disease Trajectories

Abstract:

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms and condition trajectories. To improve the understanding of these, automated analysis of large amounts of patient data holds promise. Routinely documented assessments are useful for large-scale analysis, however relevant information is mainly in free text. As a first step to extract symptom and condition trajectories, natural language processing (NLP) methods are useful to identify important textual content and relevant information. In this paper, we propose an agnostic NLP method of extracting segments of patients’ clinical histories in CFS assessments. Moreover, we present initial results on the advantage of using these segments to quantify and analyse the presence of certain clinically relevant concepts.

Source: Priou S, Viani N, Vernugopan V, et al. Clinical History Segment Extraction from Chronic Fatigue Syndrome Assessments to Model Disease Trajectories. Stud Health Technol Inform. 2020;270:98-102. doi:10.3233/SHTI200130 https://pubmed.ncbi.nlm.nih.gov/32570354/

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 syndrome and occupational health

Abstract:

Chronic fatigue syndrome (CFS) is a controversial condition that many occupational physicians find difficult to advise on. In this article we review the nature and definition of CFS, the principal aetiologic hypotheses and the evidence concerning prognosis. We also outline a practical approach to patient assessment, diagnosis and management. The conclusions of this review are then applied to the disability discrimination field. The implications of the new UK occupational health legislation are also examined. Despite continuing controversy about the status, aetiology and optimum management of CFS, we argue that much can be done to improve the outcome for patients with this condition. The most urgent needs are for improved education and rehabilitation, especially in regard to employment. Occupational physicians are well placed to play an important and unique role in meeting these needs.

 

Source: Mounstephen A, Sharpe M. Chronic fatigue syndrome and occupational health. Occup Med (Lond). 1997 May;47(4):217-27. http://occmed.oxfordjournals.org/content/47/4/217.long (Full article)

 

Chronic fatigue syndrome. A practical guide to assessment and management

Abstract:

Chronic fatigue and chronic fatigue syndrome (CFS) have become increasingly recognized as a common clinical problem, yet one that physicians often find difficult to manage. In this review we suggest a practical, pragmatic, evidence-based approach to the assessment and initial management of the patient whose presentation suggests this diagnosis. The basic principles are simple and for each aspect of management we point out both potential pitfalls and strategies to overcome them.

The first, and most important task is to develop mutual trust and collaboration. The second is to complete an adequate assessment, the aim of which is either to make a diagnosis of CFS or to identify an alternative cause for the patient’s symptoms. The history is most important and should include a detailed account of the symptoms, the associated disability, the choice of coping strategies, and importantly, the patient’s own understanding of his/her illness. The assessment of possible comorbid psychiatric disorders such as depression or anxiety is mandatory.

When the physician is satisfied that no alternative physical or psychiatric disorder can be found to explain symptoms, we suggest that a firm and positive diagnosis of CFS be made.

The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse).

Interventions are then aimed to overcoming these illness-perpetuating factors. The role of antidepressants remains uncertain but may be tried on a pragmatic basis. Other medications should be avoided. The only treatment strategies of proven efficacy are cognitive behavioral ones. The most important starting point is to promote a consistent pattern of activity, rest, and sleep, followed by a gradual return to normal activity; ongoing review of any ‘catastrophic’ misinterpretation of symptoms and the problem solving of current life difficulties.

We regard chronic fatigue syndrome as important not only because it represents potentially treatable disability and suffering but also because it provides an example for the positive management of medically unexplained illness in general.

 

Source: Sharpe M, Chalder T, Palmer I, Wessely S. Chronic fatigue syndrome. A practical guide to assessment and management. Gen Hosp Psychiatry. 1997 May;19(3):185-99. http://www.ncbi.nlm.nih.gov/pubmed/9218987

 

‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis

Abstract:

BACKGROUND: Myalgic encephalomyelitis (ME) is a mysterious and controversial condition. Debate has centred upon its causation, and the purchasing question-which services to commission for people with ME-has not been addressed.

METHODS: A health needs assessment was made of people with ME in Wakefield, based upon published (including grey) literature, and local informants.

RESULTS: Previous studies have mostly reflected institutional outbreaks; local needs will reflect community, sporadic cases but there is little information about these. The very wide estimates of prevalence (between zero and 57000 for a district the size of Wakefield) indicate a fundamental problem over the validity of the concept of ME. Four sets of health needs emerged from the literature and from local informants: a medical diagnosis, rest, specific treatments and social care. All four are highly debatable.

CONCLUSION: There are no proven services or interventions which the health authority should purchase for people with ME. Purchasing, being a blunt tool for service change, is unlikely to improve health care given the disagreements over the condition.

 

Source: Sutton GC. ‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis. J Public Health Med. 1996 Sep;18(3):343-9. http://jpubhealth.oxfordjournals.org/content/18/3/343.long (Full article)

 

A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program

Abstract:

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

 

Source: Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL. A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Eval Health Prof. 1996 Jun;19(2):194-207. http://www.ncbi.nlm.nih.gov/pubmed/10186910