Epidemiology of paediatric chronic fatigue syndrome in Australia

Abstract:

OBJECTIVE: To estimate the paediatrician-diagnosed incidence of chronic fatigue syndrome (CFS) in Australia, and describe demographic and clinical features, as well as approaches to diagnosis and management.

METHODS: The Australian Paediatric Surveillance Unit facilitates monthly national surveillance of uncommon conditions seen by paediatricians. Data from young people aged <18 years diagnosed with CFS were collected. Incidence was estimated based on new cases reported from April 2015 to April 2016.

RESULTS: A total of 164 cases of newly diagnosed CFS in young people aged 4-17 years were identified for inclusion. The estimated national incidence for children aged 4-9 years was 0.25 per 100 000 per annum. In children aged 10-17 years, the estimated incidence of paediatrician-diagnosed cases for Victoria (17.48 per 100 000) was substantially greater than other Australian states (range 1.31-5.51 per 100 000). Most cases were female and Caucasian, most commonly presenting after an infectious illness with symptoms gradual in onset. The majority were diagnosed at least 13 months after symptom onset. Symptoms, associations, investigations and management strategies were highly variable.

CONCLUSIONS: Current findings suggest that, consistent with other countries, the Australian incidence of CFS in children aged <10 years is very low. In contrast, the national incidence of CFS in older children and adolescents (aged 10-17 years) is more unclear, with marked variability between geographical regions apparent. This may be due to variation in service accessibility and clinician understanding of CFS. Accordingly, national initiatives to improve equity of care for children with CFS may be required.

© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.

Source: Knight S, Elders S, Rodda J, Harvey A, Lubitz L, Rowe K, Reveley C, Hennel S, Towns S, Kozlowska K, Payne DN, Marshall-Gradisnik S, Scheinberg A. Epidemiology of paediatric chronic fatigue syndrome in Australia. Arch Dis Child. 2019 Feb 23. pii: archdischild-2018-316450. doi: 10.1136/archdischild-2018-316450. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30798255

Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients

Abstract:

BACKGROUND: No epidemiological investigations have previously been conducted in Australia according to the current clinical definitions of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The aim of this study was to describe sociodemographic and illness characteristics of Australian patients with CFS/ME.

METHODS: A cross-sectional survey on the medical history of patients enrolled in an Australian CFS/ME research database between April 2013 and April 2015. Participants were classified according to Fukuda criteria and International Consensus Criteria.

RESULTS: A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. The mean age of all patients was 46.4 years (standard deviation 12.0); the majority were female (78.61%), Caucasian, and highly educated. Of these, 30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions. Within those meeting CFS/ME criteria, the most common events prior to illness included cold or flu, gastrointestinal illness, and periods of undue stress. Of the 60 symptoms surveyed, fatigue, cognitive, and short-term memory symptoms, headaches, muscle and joint pain, unrefreshed sleep, sensory disturbances, muscle weakness, and intolerance to extremes of temperature were the most commonly occurring symptoms (reported by more than two-thirds of patients). Significant differences in symptom occurrence between Fukuda- and International Consensus Criteria-defined cases were also identified.

CONCLUSION: This is the first study to summarize sociodemographic and illness characteristics of a cohort of Australian CFS/ME patients. This is vital for identifying potential risk factors and predictors associated with CFS/ME and for guiding decisions regarding health care provision, diagnosis, and management.

 

Source: Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol. 2016 May 17;8:97-107. doi: 10.2147/CLEP.S96797. ECollection 2016. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4878662/ (Full article)

 

How is paediatric chronic fatigue syndrome/myalgic encephalomyelitis diagnosed and managed by paediatricians? An Australian Paediatric Research Network Study

Abstract:

AIM: The diagnosis and management of paediatric chronic fatigue syndrome/myalgic encepnalomyelitis (CFS/ME) represent ongoing challenges for paediatricians. A better understanding of current approaches at a national level is important in informing where research and education could improve treatment outcomes. We aimed to examine current diagnosis and management practices for CFS/ME by Australian paediatricians.

METHOD: An online survey was sent to members of the Australian Paediatric Research Network. The primary outcomes of interest included diagnostic criteria used, medical investigations and management practices in paediatric CFS/ME.

RESULTS: One hundred seventy-eight (41%) of 430 eligible paediatricians responded, with 70 of the 178 (39%) reporting that they diagnose and manage CFS/ME as part of their practice. Medical investigations used for diagnosis were variable. Conditions that more than half of the paediatricians reported as commonly co-occurring (i.e. present in >50% of cases) included somatisation disorders, anxiety, depression and fibromyalgia. There was wide variation in behavioural and pharmacological management strategies but most paediatricians commonly engaged a school teacher, physiotherapist and/or psychologist as part of their management.

CONCLUSION: The diagnostic and management practices of paediatricians for CFS/ME within Australia vary widely. This likely reflects a paucity of paediatric-specific guidelines, together with limited evidence to guide best practice and limited training in this area. There is a need for guidance and education for the diagnosis and management of paediatric CFS/ME in Australia.

© 2014 The Authors. Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

 

Source: Knight S, Harvey A, Towns S, Payne D, Lubitz L, Rowe K, Reveley C, Hennel S, Hiscock H, Scheinberg A. How is paediatric chronic fatigue syndrome/myalgic encephalomyelitis diagnosed and managed by paediatricians? An Australian Paediatric Research Network Study. J Paediatr Child Health. 2014 Dec;50(12):1000-7. doi: 10.1111/jpc.12677. Epub 2014 Jul 10. https://www.ncbi.nlm.nih.gov/pubmed/25041646

 

Chronic fatigue syndrome: successful outcome of an intensive inpatient programme

Abstract:

OBJECTIVE: To study the outcome of adolescents with chronic fatigue syndrome (CFS) following an intensive multi-disciplinary inpatient programme.

METHODS: A follow-up questionnaire was distributed to all 57 adolescents who had completed the CFS inpatient programme at the Austin and Repatriation Medical Centre.

RESULTS: Forty-two adolescents (74%) returned follow-up questionnaires. Immediately following the programme and up to five years after the programme, the majority of participants had returned to school and were functioning better in terms of physical activity and social interactions as compared with before the programme. Before the programme, 94% of adolescents were attending school half-time or less. Up to 5 years after the programme, 78% of adolescents were attending school full-time or with occasional absences only.

CONCLUSIONS: A multidisciplinary inpatient programme for CFS was successful in helping to rehabilitate this group of adolescents who were significantly incapacitated prior to entering the inpatient programme.

 

Source: Lim A, Lubitz L. Chronic fatigue syndrome: successful outcome of an intensive inpatient programme. J Paediatr Child Health. 2002 Jun;38(3):295-9. http://www.ncbi.nlm.nih.gov/pubmed/12047700

 

The genetic aetiology of somatic distress

Abstract:

BACKGROUND: Somatoform disorders such as neurasthenia and chronic fatigue syndrome are characterized by a combination of prolonged mental and physical fatigue. This study aimed to investigate the heritability of somatic distress and determine whether this dimension is aetiologically distinct from measures of depression and anxiety.

METHOD: Measures of anxiety, depression, phobic anxiety, somatic distress and sleep difficulty were administered in a self-report questionnaire to a community-based sample of 3469 Australian twin individuals aged 18 to 28 years. Factor analysis using a Promax rotation, produced four factors: depression, phobic anxiety, somatic distress and sleep disturbance. Multivariate and univariate genetic analyses of the raw categorical data scores for depression, phobic anxiety and depression were then analysed in Mx1.47.

RESULTS: Univariate genetic analysis revealed that an additive genetic and non-shared environmental (AE) model best explained individual differences in depression and phobic anxiety scores, for male and female twins alike, but could not resolve whether additive genes or shared environment were responsible for significant familial aggregation in somatic distress. However, multivariate genetic analysis showed that an additive genetic and non-shared environment (AE) model best explained the covariation between the three factors. Furthermore, 33 % of the genetic variance in somatic distress was due to specific gene action unrelated to depression or phobic anxiety. In addition, 74% of the individual environmental influence on somatic distress was also unrelated to depression or phobic anxiety.

CONCLUSION: These results support previous findings that somatic symptoms are relatively aetiologically distinct both genetically and environmentally from symptoms of anxiety and depression.

 

Source: Gillespie NA, Zhu G, Heath AC, Hickie IB, Martin NG. The genetic aetiology of somatic distress. Psychol Med. 2000 Sep;30(5):1051-61. http://www.ncbi.nlm.nih.gov/pubmed/12027042

 

Chronic fatigue syndrome and Australian psychiatry: lessons from the UK experience

Abstract:

OBJECTIVE: The aim of this paper is to outline the opportunities and dangers the chronic fatigue syndrome (CFS) issue presents to Australian psychiatry.

METHOD: The scientific literature of the last 50 years on CFS in adults was reviewed and samples of recent media portrayals of CFS in the UK and Australia were collected. The author has worked in both the UK and Australia managing adult CFS patients in specialist outpatient consultation-liaison (C-L) psychiatry settings.

RESULTS: Chronic fatigue syndrome has been at the heart of an acrimonious debate in the UK, both within the medical profession and in the wider community. UK psychiatry has been drawn into the debate, at times being the target of strong and potentially damaging criticism, yet UK psychiatry, especially the C-L subspecialty, has played a crucial role in clarifying appropriate research questions and in devising management strategies. The issue has served to enhance and broaden psychiatry’s perceived research and clinical role at the important medicine-psychiatry interface in that country.

CONCLUSIONS: Handled properly, the CFS issue offers Australian psychiatry, especially C-L psychiatry, an opportunity to make a useful contribution to patient care in a clinically difficult and contentious area, while at the same time serving to help broaden psychiatry’s scope in the Australian medical landscape.

 

Source: Couper J. Chronic fatigue syndrome and Australian psychiatry: lessons from the UK experience. Aust N Z J Psychiatry. 2000 Oct;34(5):762-9. http://www.ncbi.nlm.nih.gov/pubmed/11037362

 

General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome

Abstract:

OBJECTIVE: To undertake a survey of Australian general practitioners (GPs) to explore their beliefs, attitudes and reported actions with respect to chronic fatigue syndrome (CFS).

METHOD: A random sample of 2090 Australian GPs, stratified by state, was surveyed in May-August 1995.

RESULTS: A 77% response rate was obtained. For the majority of practitioners who pursue a diagnosis of CFS, six symptoms were considered to be of significance: chronic unremitting fatigue for over 6 months; failure to recover energy after rest; reduced exercise tolerance; prostration for several days after exercise; generalised myalgia and poor concentration. Individual counselling was the most frequently used treatment. Thirty-one percent of practitioners reported that they did not believe that CFS is a distinct syndrome. Of these, 70% reported that the most likely cause of chronic fatigue was depression.

CONCLUSION: There is considerable diversity of opinion between practitioners about CFS. The diversity extends from questioning whether the syndrome even exists to different strategies for diagnosis and management.

 

Source: Steven ID, McGrath B, Qureshi F, Wong C, Chern I, Pearn-Rowe B. General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome. Aust Fam Physician. 2000 Jan;29(1):80-5. http://www.ncbi.nlm.nih.gov/pubmed/10721550

 

Changing epidemiology of Ross River virus disease in South Australia

Abstract:

OBJECTIVE: To investigate changes in epidemiology and symptoms of Ross River virus (RRV) disease in South Australia.

DESIGN: Longitudinal questionnaire-based survey of notified cases from one to 36 months after infection.

SUBJECTS: All patients with recent serologically confirmed RRV infection notified to the Communicable Disease Control Unit, South Australian Health Commission, between 1 October 1992 and 30 June 1993.

OUTCOME MEASURES: Sociodemographic data, source of infection, symptoms and ability to carry out daily activities (at onset of illness and at time of questionnaire, up to 36 months after infection), symptom duration, economic impact of the illness, cases recovery time, factors predictive of delayed recovery.

RESULTS: Information was obtained on the acute illness from 698 of the 821 subjects and at 15 months after infection from 436. At 15 months, 51% of respondents still had joint pain and 45% had persistent tiredness and lethargy. Other common symptoms included myalgia (34%), lymphadenopathy (25%), headache (23%) and depression (22%). These symptoms were still common 30 months after infection. Increasing age was the only statistically significant predictor of delayed recovery. Infections were acquired across the State, away from previously recognised RRV-endemic areas.

CONCLUSIONS: For many people, RRV disease is debilitating, with long term symptoms similar to those of chronic fatigue syndrome. The geographic range of the infection has expanded in SA.

Comment in:

The changing epidemiology of Ross River virus disease in South Australia. [Med J Aust. 1997]

Ross River virus disease and rheumatoid arthritis. [Med J Aust. 1997]

The changing epidemiology of Ross River virus disease in South Australia. [Med J Aust. 1997]

 

Source: Selden SM, Cameron AS. Changing epidemiology of Ross River virus disease in South Australia. Med J Aust. 1996 Sep 16;165(6):313-7. http://www.ncbi.nlm.nih.gov/pubmed/8862330

 

The economic impact of chronic fatigue syndrome

Abstract:

OBJECTIVE: To estimate the economic impact of chronic fatigue syndrome (CFS) on the individual, the government, and the community.

DESIGN: The financial burden produced by CFS was studied by calculating the direct and indirect costs arising from the disorder. Data regarding use of health resources, income and employment were obtained by questionnaire from patients with CFS. In addition, aggregate Medicare data on the incidence and fees charged for each Schedule item for these patients was obtained.

SETTING: The Richmond Valley, New South Wales.

PARTICIPANTS: Forty-two patients with CFS identified in our population-based prevalence study.

RESULTS: The conservative estimate of the per annum costs of CFS in the Richmond Valley, with a prevalence of 37.1 cases per 100,000, was $396,000. If extrapolated to the Australian population, we estimate CFS would generate an annual cost of at least $59 million.

CONCLUSION: This disorder constitutes a large but neglected area of health resource utilisation and economic burden.

Comment in: The economic impact of chronic fatigue syndrome. [Med J Aust. 1993]

 

Source: Lloyd AR, Pender H. The economic impact of chronic fatigue syndrome. Med J Aust. 1992 Nov 2;157(9):599-601. http://www.ncbi.nlm.nih.gov/pubmed/1406420

 

Prevalence of chronic fatigue syndrome in an Australian population

Abstract:

An epidemiological study was undertaken to provide the first reported estimate of the point prevalence of chronic fatigue syndrome in an Australian community.

After a pilot study in a separate location, the population of the Richmond Valley, New South Wales, was sampled using a structured case-finding technique, which included notification from local medical practitioners, the use of a screening questionnaire and standardised interviews conducted by a physician and psychiatrist. In addition, investigations were performed to exclude alternative diagnoses and to assess cell-mediated immunity.

Forty-two patients with chronic fatigue syndrome, with a female:male ratio of 1.3:1.0, were detected in a population of 114,000. The mean age at onset of symptoms was 28.6 years (SD, 12.3 years), and the median duration of symptoms from onset to sampling date was 30 months. The social status of the patients was distributed in accordance with that of the remainder of the population sampled, with no bias towards the middle or upper social classes. The disorder was causing considerable incapacity, with 43% of patients unable to attend school or work.

The conservative estimate from this study suggests a prevalence on June 30 1988 of 37.1 cases per 100,000 (95% confidence interval [CI], 26.8-50.2). Chronic fatigue syndrome is an important disorder in this Australian community that affects young individuals from all social classes and causes considerable ill health and disability.

 

Source:  Lloyd AR, Hickie I, Boughton CR, Spencer O, Wakefield D. Prevalence of chronic fatigue syndrome in an Australian population. Med J Aust. 1990 Nov 5;153(9):522-8. http://www.ncbi.nlm.nih.gov/pubmed/2233474