Category: Medical Care

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]

Excerpt:

The guideline covers care provided by healthcare professionals who have direct contact with and make decisions about the care of people with chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (CFS/ME). It covers care provided in primary and secondary care, and in specialist centres/teams. The Guideline Development Group (GDG) developed this guideline with the aims of: increasing the recognition of CFS/ME; influencing practice in the ‘real world’; improving access to appropriate services, and supporting consistent service provision; emphasising the need for multidisciplinary working; improving care for patients, particularly for those with severe CFS/ME; providing guidance on ‘best practice’ for children with CFS/ME; balancing clinical guidance with flexibility and management tailored to the needs of the patient; facilitating communication between practitioners and patients, and their families or carers, as appropriate.

Copyright © 2007, Royal College of General Practitioners.

 

Source: National Collaborating Centre for Primary Care (UK). London: Royal College of General Practitioners (UK); 2007 Aug.  National Institute for Health and Clinical Excellence: Guidance. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0009713/ (Full document)

 

Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study

Abstract:

BACKGROUND: The 2007 National Institute for Health and Clinical Excellence guidelines on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) recommend early management of the condition. Investment by the Department of Health has expanded the number of specialist U.K. CFS/ME services but there has been little research on what patients hope or expect from referral.

METHODS: A qualitative study exploring hopes and expectations of patients newly referred to a CFS/ME Service in the South of England. Interviews with 20 patients were analysed using the constant comparative method.

RESULTS: Participants hoped referral to a specialist service would clarify diagnosis, give guidance and support, assist in understanding the complexity of the illness and provide hope for the future. While many participants valued the support of their GP, all viewed referral as offering a level of specialist expertise beyond that available in primary care. Many participants expressed high levels of uncertainty about the nature of CFS/ME. While participants hoped that the service would be able to provide information and guidance, many expressed the view that more information earlier in their illness would make the waiting period less stressful and make it possible for them to do more to help themselves.

CONCLUSIONS: GP referral to a specialist service appeared to be highly valued by the participants in this study. The levels of uncertainty expressed by many patients about the nature of CFS/ME raises the issue of the role of information on CFS/ME during the early stages of the illness and suggests a need for more reassurance and positive advice during the waiting period.

 

Source: McDermott C, Lynch J, Leydon GM. Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study. Fam Pract. 2011 Oct;28(5):572-8. doi: 10.1093/fampra/cmr016. Epub 2011 May 9. http://fampra.oxfordjournals.org/content/28/5/572.long (Full article)

 

Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study.

Abstract:

AIM: To establish what factors are important for patients to engage in a new intervention for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and make recommendations to general practitioners (GPs) on preparing a patient for referral to such a service.

BACKGROUND: NICE guidelines recommend a prominent role for primary care in the management of patients with CFS/ME, with prompt diagnosis and appropriate referral for evidence-based treatments.

METHODS: A qualitative study nested within a multi-centre randomised controlled trial of two new nurse therapist delivered interventions. Semi-structured interviews carried out with 19 patients who had received pragmatic rehabilitation (PR) in the trial. Interviews were transcribed verbatim and an iterative approach used to develop themes from the data set.

FINDINGS:Factors that influence whether or not a patient engages with PR for CFS/ME are ensuring that the patient feels accepted and believed, that they accept the diagnosis, and that the model implicated by the treatment offered to the patient matches the model of illness held by the patient. If patients hold a clearly incompatible model of their illness, it is unlikely that they will engage with, and successfully complete, therapy. It is vital that the GP elicits and explores such illness beliefs either before making a referral to maximise patient engagement in therapy, or that an initial session with the therapist explores attitudes to the treatment model offered and then works with the patient’s model.

 

Source: Chew-Graham C, Brooks J, Wearden A, Dowrick C, Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study. Prim Health Care Res Dev. 2011 Apr;12(2):112-22. doi: 10.1017/S146342361000037X. https://www.ncbi.nlm.nih.gov/pubmed/21457596

 

Classifying medication use in clinical research

Abstract:

BACKGROUND: Medication use data are usually collected in clinical research. Yet no standardized method for categorizing these exists, either for sample description or for the study of medication use as a variable.

OBJECTIVE: The present investigation was designed to develop a simple, empirically based classification scheme for medication use categorization.

METHOD: The authors used factor analysis to reduce the number of possible medication groupings. This permitted a pattern of medication usage to emerge that appeared to characterize specific clinical constellations. To illustrate the technique’s potential, the authors applied this classification system to samples where sleep disorders are prominent: chronic fatigue syndrome and sleep apnea.

RESULTS: The authors’ classification approach resulted in 5 factors that appear to cohere in a logical fashion. These were labeled Cardiovascular or Metabolic Syndrome Medication, Symptom Relief Medication, Psychotropic Medication, Preventative Medication, and Hormonal Medication.

CONCLUSIONS: The findings show that medication profile varies according to clinical sample. The medication profile for participants with sleep apnea reflects known comorbid conditions; the medication profile associated with chronic fatigue syndrome appears to reflect the common perception of this condition as a psychogenic disorder.

 

Source: Rizzo D, Creti L, Bailes S, Baltzan M, Grad R, Amsel R, Fichten CS, Libman E. Classifying medication use in clinical research. J Prim Care Community Health. 2011 Jan 1;2(1):26-32. doi: 10.1177/2150131910385843. Epub 2010 Oct 27. https://www.ncbi.nlm.nih.gov/pubmed/23804659

 

The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same

Abstract:

In England the Department of Health has funded specialist clinical services aimed at diagnosing and managing the symptoms of chronic fatigue syndrome (CFS). These services are not available to those who do not fulfil the diagnostic criteria for CFS. This service evaluation examined the proportion of those referred to a specialist CFS service fulfilling the Fukuda diagnostic criteria for CFS and the alternative fatigue-associated diagnoses. The CFS database was interrogated to include every patient referred to the Newcastle service from November 2008 to December 2009. All medical notes were reviewed and the diagnosis, sex and age recorded. Data were compared to a previous service evaluation (2005-07).

In 2008-09, 260 subjects were referred: 19 referrals per month (260/14), compared with 17 referrals per month in 2005-07 (375/24). The proportion of patients diagnosed with CFS increased significantly compared with 2007 (36% [20/56] vs 60% [157/260]; p < 0.0001). Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder. Thirteen per cent remained unexplained (5.2% of the total referrals).

This study found a significant increase in the proportion of patients referred to National Health Service (NHS) CFS services diagnosed with CFS. A large proportion of patients presenting with fatigue are not eligible for referral to the Department of Health specialist fatigue services, which represents an unmet need in terms of symptom management in current NHS services.

 

Source: Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7. doi: 10.4997/JRCPE.2010.404. https://www.ncbi.nlm.nih.gov/pubmed/21132135

 

Frequency and content analysis of chronic fatigue syndrome in medical text books

Abstract:

Text books are a cornerstone in the training of medical staff and students, and they are an important source of references and reviews for these professionals. The objective of this study was to determine both the quantity and quality of chronic fatigue syndrome (CFS) information included in medical texts.

After reviewing 119 medical text books from various medical specialties, we found that 48 (40.3%) of the medical text books included information on CFS. However, among the 129 527 total pages within these medical text books, the CFS content was presented on only 116.3 (0.090%) pages. Other illnesses that are less prevalent, such as multiple sclerosis and Lyme disease, were more frequently represented in medical text books. These findings suggest that the topic of CFS is underreported in published medical text books.

 

Source: Jason LA, Paavola E, Porter N, Morello ML. Frequency and content analysis of chronic fatigue syndrome in medical text books. Aust J Prim Health. 2010;16(2):174-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691015/ (Full article)

 

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional ‘best practice’ in working with people with CFS/ME.

METHODS: The views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.

RESULTS: Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.

CONCLUSIONS: While professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.

 

Source: Horton SM, Poland F, Kale S, Drachler Mde L, de Carvalho Leite JC, McArthur MA, Campion PD, Pheby D, Nacul L. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice. BMC Fam Pract. 2010 Nov 15;11:89. doi: 10.1186/1471-2296-11-89. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994803/ (Full article)

 

U.S. healthcare providers’ knowledge, attitudes, beliefs, and perceptions concerning Chronic Fatigue Syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a debilitating illness with particular difficulties for healthcare providers because there are no diagnostic signs or laboratory tests and because management aims to merely improve symptoms. Further complicating management, healthcare providers’ awareness concerning CFS has not been rigorously assessed. The present study aimed to ascertain United States (U.S.) healthcare providers’ awareness of CFS and to assess their knowledge, attitudes, and beliefs (KAB) related to diagnosis and management of the illness. This information forms the foundation for developing CFS educational strategies.

METHODS: We combined convenience and probability samples to measure CFS KAB among healthcare providers. In the convenience sample, 1,255 healthcare providers (81% response rate) from 13 professional conferences completed a 12-item form. Descriptive statistics were reported for 9 KAB item responses and chi-square tests were performed for examining their association with giving a diagnosis of CFS. We used principal component analysis to construct multidimensional subscales and perform a general linear model to examine factors associated with subscales. The probability sample involved data on 15 CFS-specific questions from 2006 and 2007 DocStyles web-based panel surveys collected from 2,750 physicians (average response rate 55%). We calculated descriptive and chi-square statistics. The significance was set at two-tailed with the alpha level of 0.05.

RESULTS: Healthcare providers in both samples were aware of CFS and exhibited a high level of knowledge. Overall, 96% of respondents in the DocStyles (probability) sample had heard about CFS. Healthcare providers in the conference (convenience) sample demonstrated good KAB scores; physicians’ scores were highest on KAB scales and lowest in perception. Nurses’ scores were lowest in knowledge. More than 40% of physicians reported ever giving a CFS diagnosis and in the DocStyles (probability) sample more than 80% of physicians correctly identified CFS symptoms. Physicians reported professional journals, the Internet, and continuing education programs as the top 3 sources from which they obtain CFS information.

CONCLUSIONS: Findings from these combined samples fill a gap in the evidence-base of U.S. healthcare providers’ and knowledge, attitudes, and beliefs concerning CFS. Importantly, respondents in both samples expressed similar knowledge, attitudes, beliefs and perceptions. Awareness was high and negative attitudes were low. The primary areas for future education should address diagnosis and management of CFS and should be delivered through those venues providers indicated they primarily use. Data from this study provide a benchmark for evaluation the success of these future efforts.

 

Source: Brimmer DJ, Fridinger F, Lin JM, Reeves WC. U.S. healthcare providers’ knowledge, attitudes, beliefs, and perceptions concerning Chronic Fatigue Syndrome. BMC Fam Pract. 2010 Apr 21;11:28. doi: 10.1186/1471-2296-11-28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2875206/ (Full article)

 

A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors

Abstract:

The aetiology, symptoms, diagnosis and treatment of ME/CFS are controversial. Doctors and sufferers often have opposing perspectives, leading to problematic clinical interactions. We use discourse analysis to explore ME/CFS sufferers’ descriptions of interactions with medical professionals taken from an asynchronous, online sufferers’ support group. Participants described themselves as experiencing limited medical care and attention but restricted criticisms to ‘legitimate’, pragmatic or ancillary matters such as a clinicians’ unwillingness to prescribe untested treatments. Participants also described themselves as active in seeking a resolution to their problems. They thus attended to possible negative attributions of being ‘complaining’ or unmotivated to seek recovery.

 

Source: Guise J, McVittie C, McKinlay A. A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors. J Health Psychol. 2010 Apr;15(3):426-35. Doi: 10.1177/1359105309350515. https://www.ncbi.nlm.nih.gov/pubmed/20348363

 

Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study

Abstract:

BACKGROUND: NICE guidelines emphasise the role of the primary care team in the management of patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME). A key stage in effective management is making an accurate early diagnosis, supported by appropriate referral.

METHODS: A nested qualitative study within a multi-centre randomised controlled trial which aimed to explore GPs’ views on their role in making the diagnosis of CFS/ME and subsequent management of patients in primary care. Semi-structured interviews with 22 GPs. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: GPs described difficulties in defining CFS/ME and suggested that their role in making a diagnosis was to exclude physical causes for the patient’s symptoms, but they reported little confidence in positively attributing the label of CFS/ME to a patient and their symptoms. GPs suggested that the label of CFS/ME could be potentially harmful for the patient. The role of referral to secondary care was debated and GPs struggled defining their own role in management of this group of patients.

CONCLUSIONS: Until GPs feel comfortable making the diagnosis of CFS/ME and facilitating initial management, and have appropriate services to refer patients to, there will continue to be delays in confirming the diagnosis and patients presenting in primary care with fatigue may not receive appropriate care.

TRIAL REGISTRATION: ISRCTN 74156610.

 

Source: Chew-Graham C, Dowrick C, Wearden A, Richardson V, Peters S. Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study. BMC Fam Pract. 2010 Feb 23;11:16. doi: 10.1186/1471-2296-11-16. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2836312/ (Full article)