Australia – Page 2 – American ME and CFS Society

The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort

Abstract:

Objectives: This study aims to estimate direct and indirect health economic costs associated with government and out-of-pocket (OOP) expenditure based on health care service utilization and lost income of participants and carers, as reported by Australian Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patient survey participants.

Design: A cost of illness study was conducted to estimate Australian cost data for individuals with a ME/CFS diagnosis as determined by the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC), and the 1994 CDC Criteria (Fukuda).

Setting and participants: Survey participants identified from a research registry database provided self-report of expenditure associated with ME/CFS related healthcare across a 1-month timeframe between 2017 and 2019.

Main outcome measures: ME/CFS related direct annual government health care costs, OOP health expenditure costs, indirect costs associated with lost income and health care service use patterns.

Results: The mean annual cost of health care related expenditure and associated income loss among survey participants meeting diagnostic criteria for ME/CFS was estimated at $14.5 billion. For direct OOP and Government health care expenditure, high average costs were related to medical practitioner attendance, diagnostics, natural medicines, and device expenditure, with an average attendance of 10.6 referred attendances per annum and 12.1 GP visits per annum related specifically to managing ME/CFS.

Conclusions: The economic impacts of ME/CFS in Australia are significant. Improved understanding of the illness pathology, diagnosis, and management, may reduce costs, improve patient prognosis and decrease the burden of ME/CFS in Australia.

Source: Close S, Marshall-Gradisnik S, Byrnes J, Smith P, Nghiem S, Staines D. The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort. Front Public Health. 2020 Aug 21;8:420. doi: 10.3389/fpubh.2020.00420. PMID: 32974259; PMCID: PMC7472917. https://www.frontiersin.org/articles/10.3389/fpubh.2020.00420/full (Full text)

Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study.

Abstract:

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and debilitating disorder associated with significant disruptions in daily life including. This study aimed to examine the impact of sociodemographic and patient symptom characteristics on health-related quality of life (HRQoL) of Australians with ME/CFS.

METHODS: Self-reported data collected from 480 individuals diagnosed with ME/CFS were obtained between August 2014 and August 2018. This cross-sectional survey analysed sociodemographic, symptom characteristics and HRQoL according to the 36-Item Health Survey (SF-36). Multivariate linear regression models were used to determine ME/CFS symptoms associated with eight domains of HRQoL.

RESULTS: Reported HRQoL was significantly impaired in ME/CFS patients across all domains compared with the general population. Scores were the lowest for physical role (4.11 ± 15.07) and energy/fatigue (13.54 ± 13.94). Associations with females, higher body mass index (BMI), employment status, cognitive difficulties, sensory disturbances and cardiovascular symptoms were observed in the physical functioning domain. Impaired pain domain scores were associated with high BMI, annual visits to their general practitioner, flu-like symptoms and fluctuations in body temperature. Reduced well-being scores were associated with smoking status, psychiatric comorbidity, cognitive difficulties, sleep disturbances and gastrointestinal difficulties.

CONCLUSION: This study provides evidence that ME/CFS has a profound and negative impact on HRQoL in an Australian cohort.

Source: Eaton-Fitch N, Johnston SC, Zalewski P, Staines D, Marshall-Gradisnik S. Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study. Qual Life Res. 2020 Jan 22. doi: 10.1007/s11136-019-02411-6. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31970624

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.

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.

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