The Hindi Version of International Consensus Criteria: A Cross-cultural Adaptation and Validation Study for Myalgic Encephalomyelitis in Post-COVID Patients

Abstract: 

Context: Fatigue is the most prominent feature of long COVID. With the increasing burden of long COVID cases post-acute phase of illness after recurrent waves of the pandemic, understanding its pathophysiology is of paramount importance.

Such fatigue and post-viral illness could be associated with features of neuroimmune exhaustion and thus be a part of a larger syndrome such as myalgic encephalomyelitis (ME).

Identifying the proportion of patients having ME from those experiencing fatigue would bring us one step closer to understanding the pathophysiology. International consensus criteria (ICC) originally published in English (ICC-E) is a valid and reliable tool for identifying cases of ME. However, a validated Hindi version of ICC-E is not available.

Aims: To develop and validate an equivalent version of ICC-E in the native Hindi language (ICC-H) to suit Indian patients and health care workers even at peripheries and to make conducting large scales surveys more feasible.

Subjects and methods: Once permission from the ethics board was granted, guidelines given by MAPI Research Trust were followed and ICC-H was developed from ICC-E, in the following steps: (a) translation to Hindi, (b) back translation, (c) comparison between the translated and back-translated version performed by experts, and (d) pre-pilot test in the intended population. The ICC-H was applied to 53 bilingual individuals knowing both Hindi and English.

Statistical analysis used: The distribution of Hindi and English questionnaires was analyzed using the Chi-square test and Spearman’s correlation coefficient was used for correlation between answers of each question.

Results: The score of individual items and its global score was highly correlated with each other (p<0.001). The scores of individual components and global scores of ICC-H at baseline and original ICC-E after 4 weeks did not differ significantly.

Conclusion: This study shows that the ICC-H is a valid and reliable instrument for the assessment of ME. ICC-H can be used for Hindi speaking population for identifying cases of ME.

Source: Shah M, Kakar A, Gogia A. The Hindi Version of International Consensus Criteria: A Cross-cultural Adaptation and Validation Study for Myalgic Encephalomyelitis in Post-COVID Patients. J Assoc Physicians India 2022;70(10):59–63. https://www.japi.org/x2d4b494/the-hindi-version-of-international-consensus-criteria-a-cross-cultural-adaptation-and-validation-study-for-myalgic-encephalomyelitis-in-post-covid-patients  https://www.researchgate.net/profile/Atul-Gogia/publication/364241915_Postgraduate_Student_2_Vice_Chairman_and_Senior_Consultant_The_Hindi_Version_of_International_Consensus_Criteria_A_Cross-cultural_Adaptation_and_Validation_Study_for_Myalgic_Encephalomyelitis_in_Post-/links/63405e8aff870c55ce0adebf/Postgraduate-Student-2-Vice-Chairman-and-Senior-Consultant-The-Hindi-Version-of-International-Consensus-Criteria-A-Cross-cultural-Adaptation-and-Validation-Study-for-Myalgic-Encephalomyelitis-in-Post.pdf (Full text available as PDF file)

A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS

Abstract:

Few studies have compared symptomatology and functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures. The current study compared patients with CFS from the United States (US) to those from the United Kingdom (UK) across areas of functioning, symptomatology, and illness onset characteristics.

Individuals in each sample met criteria for CFS as defined by Fukuda et al. (1994). These samples were compared on two measures of disability and impairment, the DePaul Symptom Questionnarie (DSQ) and the Medical outcomes study 36-item short-form health survey (SF-36).

Results revealed that the UK sample was significantly more impaired in terms of mental health and role emotional functioning, as well as specific symptoms of pain, neurocognitive difficulties, and immune manifestations. In addition, the UK sample was more likely to be working rather than on disability.

Individuals in the US sample reported more difficulties falling asleep, more frequently reported experiencing a sudden illness onset (within 24 hours), and more often reported that the cause of illness was primarily due to physical causes. These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK, and this has implications for the comparability of research findings across these two countries.

 

Source: Zdunek M, Jason LA, Evans M, Jantke R, Newton JL. A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS. Int J Psychol Behav Sci. 2015;5(2):98-107. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4605442/ (Full article)

 

A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample

Abstract:

BACKGROUND: Few studies focus on cross-cultural differences in Chronic fatigue syndrome (CFS).

PURPOSE: This study aimed to (1) compare fatigue severity and impairment, somatic complaints, psychological distress, and quality of life (QoL) in a population of Portuguese and Dutch patients; (2) explore the differential contribution of behavioral and cognitive determinants of fatigue severity; and (3) investigate the relation between fatigue severity and somatic complaints on one hand and QoL on the other in both populations.

METHOD: Eighty-five female patients from Portugal (Mean age = 47.54) and 167 female CFS patients from The Netherlands (Mean age = 44.93) participated in the study. All participants were surveyed for demographic and clinical characteristics, fatigue severity, somatic symptoms, psychological distress, (physical and psychological) QoL, physical activity, behavior regulation patterns, and illness representations.

RESULTS: Cross-cultural differences were found in relation to working status, duration of fatigue symptoms, psychological distress, somatic complaints, and psychological QoL. Although behavioral characteristics and illness representations were significantly associated with fatigue severity in both Portuguese and Dutch patients, there were important differences in the determinants of CFS. Moreover, higher levels of fatigue and severity of other somatic complaints were related to poor QoL.

CONCLUSIONS: These findings show cross-cultural similarities and differences in clinical characteristics and psychological determinants of CFS that are important in view of diagnosis and treatment.

 

Source: Marques M, De Gucht V, Leal I, Maes S.A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample. Int J Behav Med. 2013 Jun;20(2):229-38. doi: 10.1007/s12529-012-9265-y. https://www.ncbi.nlm.nih.gov/pubmed/22972378

 

Comparative epidemiology of chronic fatigue syndrome in Brazilian and British primary care: prevalence and recognition

Abstract:

BACKGROUND: Although fatigue is a ubiquitous symptom across countries, clinical descriptions of chronic fatigue syndrome have arisen from a limited number of high-income countries. This might reflect differences in true prevalence or clinical recognition influenced by sociocultural factors.

AIMS: To compare the prevalence, physician recognition and diagnosis of chronic fatigue syndrome in London and São Paulo.

METHOD: Primary care patients in London (n=2459) and São Paulo (n=3914) were surveyed for the prevalence of chronic fatigue syndrome. Medical records were reviewed for the physician recognition and diagnosis.

RESULTS: The prevalence of chronic fatigue syndrome according to Centers for Disease Control 1994 criteria was comparable in Britain and Brazil: 2.1% v. 1.6% (P=0.20). Medical records review identified 11 diagnosed cases of chronic fatigue syndrome in Britain, but none in Brazil (P<0.001).

CONCLUSIONS: The primary care prevalence of chronic fatigue syndrome was similar in two culturally and economically distinct nations. However, doctors are unlikely to recognise and label chronic fatigue syndrome as a discrete disorder in Brazil. The recognition of this illness rather than the illness itself may be culturally induced.

Comment in: Diagnosing chronic fatigue syndrome. [Br J Psychiatry. 2009]

 

Source: Cho HJ, Menezes PR, Hotopf M, Bhugra D, Wessely S. Comparative epidemiology of chronic fatigue syndrome in Brazilian and British primary care: prevalence and recognition. Br J Psychiatry. 2009 Feb;194(2):117-22. doi: 10.1192/bjp.bp.108.051813. http://bjp.rcpsych.org/content/194/2/117.long (Full article)

 

Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings?

Abstract:

OBJECTIVE: The validity of the diagnosis of chronic fatigue syndrome and related chronic fatigue states remains controversial, particularly in psychiatry. This project utilized international epidemiological and clinical research data to test construct validity across diagnostic categories, health-care settings and countries. Relevant demographic, symptom and diagnostic data were obtained from 33 studies in 21 countries. The subjects had fatigue lasting 1-6 months (prolonged fatigue), or >6 months (chronic fatigue), or met diagnostic criteria for chronic fatigue syndrome.

METHOD: Common symptom domains were derived by factor analytic techniques. Mean scores on each symptom factor were compared across diagnostic categories, health-care settings and countries.

RESULTS: Data were obtained on 37,724 subjects (n = 20,845 female, 57%), including from population-based studies (n = 15,749, 42%), studies in primary care (n = 19 472, 52%), and secondary or specialist tertiary referral clinics (n = 2503, 7%). The sample included 2013 subjects with chronic fatigue, and 1958 with chronic fatigue syndrome. A five-factor model of the key symptom domains was preferred (‘musculoskeletal pain/fatigue’, ‘neurocognitive difficulties’, ‘inflammation’, ‘sleep disturbance/fatigue’ and ‘mood disturbance’) and was comparable across subject groups and settings. Although the core symptom profiles were similar, some differences in symptoms were observed across diagnostic categories, health-care settings and between countries.

CONCLUSIONS: The construct validity of chronic fatigue and chronic fatigue syndrome is supported by an empirically derived factor structure from existing international datasets.

 

 

Source: Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D, Lloyd A; International Chronic Fatigue Syndrome Study Group. Collaborators (28) Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? Aust N Z J Psychiatry. 2009 Jan;43(1):25-35. Doi: 10.1080/00048670802534432. https://www.ncbi.nlm.nih.gov/pubmed/19085525

 

‘Physical or psychological?’- a comparative study of causal attribution for chronic fatigue in Brazilian and British primary care patients

Abstract:

OBJECTIVE: Causal attribution influences symptom experience, help-seeking behaviour and prognosis in chronic fatigue syndrome. We compared causal attribution of patients with unexplained chronic fatigue (UCF) in Brazil and Britain.

METHOD: Primary care attenders in São Paulo (n = 3914) and London (n = 2459) were screened for the presence of UCF. Those with UCF (São Paulo n = 452; London n = 178) were assessed for causal attribution (physical vs. psychosocial), perceived chronicity (i.e. reported duration of fatigue) and disability.

RESULTS: British UCF patients were more likely to attribute their fatigue to physical causes (adjusted odds ratio 1.70, P = 0.037) and perceived their fatigue to be more chronic (adjusted beta 0.15, P = 0.002). There was no significant difference in current disability (adjusted beta -0.01, P = 0.81).

CONCLUSION: Despite similar disability levels, UCF patients in different cultural settings presented different attributions and perceptions about their illness. Sociocultural factors may have an important role in shaping illness attribution and perception around chronic fatigue.

 

Source: Cho HJ, Bhugra D, Wessely S. ‘Physical or psychological?’- a comparative study of causal attribution for chronic fatigue in Brazilian and British primary care patients. Acta Psychiatr Scand. 2008 Jul;118(1):34-41. doi: 10.1111/j.1600-0447.2008.01200.x. Epub 2008 May 22. https://www.ncbi.nlm.nih.gov/pubmed/18498433

 

The awareness of chronic fatigue syndrome: a comparative study in Brazil and the United Kingdom

Abstract:

OBJECTIVE: While in many Western affluent countries there is widespread awareness of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), little is known about the awareness of CFS/ME in low- and middle-income countries. We compared the awareness of CFS in Brazil and the United Kingdom.

METHODS: Recognition and knowledge of CFS were assessed among 120 Brazilian specialist doctors in two major university hospitals using a typical case vignette of CFS. We also surveyed 3914 and 2435 consecutive attenders in Brazilian and British primary care clinics, respectively, concerning their awareness of CFS.

RESULTS: When given a typical case vignette of CFS, only 30.8% [95% confidence interval (CI), 22.7-39.9%] of Brazilian specialist doctors mentioned chronic fatigue or CFS as a possible diagnosis, a proportion substantially lower than that observed in Western affluent countries. Similarly, only 16.2% (95% CI, 15.1-17.4%) of Brazilian primary care attenders were aware of CFS, in contrast to 55.1% (95% CI, 53.1-57.1%) of their British counterparts (P<.001). This difference remained highly significant after controlling for patients’ sociodemographic and socioeconomic characteristics (P<.001).

CONCLUSIONS: The awareness of CFS was substantially lower in Brazil than the United Kingdom. The observed difference may influence patients’ help-seeking behavior and both doctors’ and patients’ beliefs and attitudes in relation to fatigue-related syndromes. Attempts to promote the awareness of CFS should be considered in Brazil, but careful plans are required to ensure the delivery of sound evidence-based information.

 

Source: Cho HJ, Menezes PR, Bhugra D, Wessely S. The awareness of chronic fatigue syndrome: a comparative study in Brazil and the United Kingdom. J Psychosom Res. 2008 Apr;64(4):351-5. doi: 10.1016/j.jpsychores.2007.12.006. https://www.ncbi.nlm.nih.gov/pubmed/18374733

 

Neurasthenia: cross-cultural and conceptual issues in relation to chronic fatigue syndrome

Abstract:

The purpose of this study was to examine several conceptual and cross-cultural issues in neurasthenia, particularly in terms of their relationship to chronic fatigue syndrome. A review of this relationship led to the conclusion that these conditions are much more alike in Western countries than in countries such as China, where neurasthenia could almost be regarded as a “culture-bound syndrome.” This may be a consequence of factors such as the heterogeneous nature of neurasthenia and different diagnostic practices in different countries, despite the ICD-10 definition of neurasthenia, intended for worldwide use.

Likewise, there is no consensus on what the “core” characteristics of neurasthenia are, because its clinical presentation and key features in different countries are very different. Despite the finding of relatively low comorbidity rates between neurasthenia and other mental disorders, clinical experience suggests that features of neurasthenia frequently overlap with those of depression, chronic anxiety, and somatoform disorders.

There is no convincing evidence that in cases of overlap or comorbidity, other diagnoses should automatically have “primacy” over neurasthenia nor should the diagnosis of neurasthenia thereby be excluded. Although some aspects of its validity have improved recently, especially its descriptive validity, the overall validity of the diagnosis of neurasthenia is still not satisfactory. Suggestions for further research, aimed at improving the diagnostic validity of neurasthenia, are offered in this paper.

 

Source: Starcevic V. Neurasthenia: cross-cultural and conceptual issues in relation to chronic fatigue syndrome. Gen Hosp Psychiatry. 1999 Jul-Aug;21(4):249-55. http://www.ncbi.nlm.nih.gov/pubmed/10514948