Category: Medical Care

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

Abstract:

BACKGROUND: Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.

METHODS: Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.

RESULTS: Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.

CONCLUSIONS: The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.

Source: Broughton J, Harris S, Beasant L, Crawley E, Collin SM. Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England. BMC Health Serv Res. 2017 Jun 2;17(1):384. doi: 10.1186/s12913-017-2337-6. https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6  (Full article)

Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence

Abstract:

The current study sought to better understand the experience of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and CFS represent a medically-underserved population, due to lack of available care. The CFS Advisory Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS. The current study documents the need for these centers, as they would ameliorate geographic and financial barriers to quality care.

Source: Madison Sunnquist, Laura Nicholson, Leonard A. Jason, and Kenneth J. Friedman. Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence. Modern Clinical Medicine Research, Vol. 1, No. 1, April 2017. (Full article)

Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments.

Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors (and medical students) display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by healthcare professionals, and many patients vocally oppose the effectiveness, and the conceptualisation, of their illness as psychologically treatable.

We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice (2007). We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the (often unintentional) marginalisation of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

 

Source: Blease C, Carel H, Geraghty K. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome. J Med Ethics. 2016 Dec 5. pii: medethics-2016-103691. doi: 10.1136/medethics-2016-103691. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/27920164

 

Experiences of general practitioner continuity among women with chronic fatigue syndrome/myalgic encephalomyelitis: a cross-sectional study

Abstract:

BACKGROUND: Continuity of care is important for patients with chronic illness in need of coordinated healthcare services from multiple providers. Little is known about how patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience continuity of GP care. This study explores how women with CFS/ME experience GP care across the three dimensions of continuity: informational, management, and relational continuity.

METHODS: This cross-sectional study uses questionnaire data collected from members of The Norwegian ME Association. Descriptive statistics and logistic regressions were used to estimate experiences of continuity, and associations with age, education, self-rated degree of CFS/ME, duration of the GP relation (GP duration), and number of GP visits for CFS/ME-related issues during the previous year (GP frequency).

RESULTS: Almost two-thirds of participants reported positive experiences across all three dimensions of GP continuity of care; 64.4% for informational, 64.1% for management, and 77.2% for relational continuity. Lower educational attainment was associated with more negative experiences of informational continuity (primary school only compared to university educated: odds ratio [OR] 0.12, confidence interval [CI] 0.03-0.49, p = 0.003). Compared to participants aged 40-59 years, those aged 60+ years were significantly less likely to have experienced poor (negative) management continuity (OR 0.25, CI 0.09-0.76, p = 0.014). A GP relationship of three or more years was associated with positive experiences of relational continuity (OR 2.32, CI 1.09-4.95, p = 0.030). Compared to those with moderate CFS/ME, those who graded their CFS/ME as severe or very severe were significantly more likely to have negative experiences of relational continuity (OR 0.38, CI 0.14-0.99, p = 0.047).

CONCLUSIONS: A large proportion of participants experienced all three aspects of continuity of GP care (especially the relational dimension) positively. Informational and management continuity scores were moderately lower. Our results suggest greater emphasis on information giving, feedback, and better coordination of care to be good strategies for practice improvement for this patient group.

 

Source: Hansen AH, Lian OS. Experiences of general practitioner continuity among women with chronic fatigue syndrome/myalgic encephalomyelitis: a cross-sectional study. BMC Health Serv Res. 2016 Nov 14;16(1):650. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5109710/ (Full article)

 

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study

Abstract:

OBJECTIVE: To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients’ assessment of quality of primary care, specialist care and coordination of care.

DESIGN: Cross-sectional study.

SETTING: Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.

PARTICIPANTS: 431 women with CFS/ME aged 16-73 years.

MAIN OUTCOME MEASURE: The participants’ assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.

RESULTS: Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care. Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.

CONCLUSIONS: A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

 

Source: Hansen AH, Lian OS. How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study. BMJ Open. 2016 Apr 4;6(4):e010277. doi: 10.1136/bmjopen-2015-010277. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823449/ (Full article)

 

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians

Abstract:

This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS. After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms. ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US. The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID’s diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria.

The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity–lack of access to sufficient healthy foods. ME/CFS can be severely disabling and cause patients to be bedridden. Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer.

They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help.

The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.

Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient. Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

 

Source: Bested AC, Marshall LM. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Rev Environ Health. 2015;30(4):223-49. doi: 10.1515/reveh-2015-0026. https://www.ncbi.nlm.nih.gov/pubmed/26613325

 

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), in its most severe clinical presentation, can result in patients becoming housebound and bedbound so unable to access most available specialist services. This presents particular clinical risks and treatment needs for which the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring. The extent of National Health Service (NHS) specialist provision in England for severe CFS/ME is currently unknown.

OBJECTIVES: To establish the current NHS provision for patients with severe CFS/ME in England.

SETTING AND PARTICIPANTS: All 49 English NHS specialist CFS/ME adult services in England, in 2013.

METHOD: Cross-sectional survey by email questionnaire.

PRIMARY OUTCOME MEASURES: Adherence to NICE guidelines for severe CFS/ME.

RESULTS: All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was one NHS unit providing specialist inpatient CFS/ME provision in England.

CONCLUSIONS: Study findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME. Where treatment was provided, this appeared to comply with NICE recommendations for this patient group.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

 

Source: McDermott C, Al Haddabi A, Akagi H, Selby M, Cox D, Lewith G. What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise. BMJ Open. 2014 Jul 1;4(6):e005083. doi: 10.1136/bmjopen-2014-005083. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078780/ (Full article)

 

Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

Abstract:

BACKGROUND: The NICE guideline for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) emphasises the need for an early diagnosis in primary care with management tailored to patient needs. However, GPs can be reluctant to make a diagnosis and are unsure how to manage people with the condition.

METHODS: A meta synthesis of published qualitative studies was conducted, producing a multi-perspective description of barriers to the diagnosis and management of CFS/ME, and the ways that some health professionals have been able to overcome them. Analysis provided second-order interpretation of the original findings and developed third-order constructs to provide recommendations for the medical curriculum.

RESULTS: Twenty one qualitative studies were identified. The literature shows that for over 20 years health professionals have reported a limited understanding of CFS/ME. Working within the framework of the biomedical model has also led some GPs to be sceptical about the existence of the condition. GPs who provide a diagnosis tend to have a broader, multifactorial, model of the condition and more positive attitudes towards CFS/ME. These GPs collaborate with patients to reach agreement on symptom management, and use their therapeutic skills to promote self care.

CONCLUSIONS: In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended where medical school training aims to equip practitioners with the skills needed to understand, support and manage patients and provide a pathway to refer for specialist input.

 

Source: Bayliss K, Goodall M, Chisholm A, Fordham B, Chew-Graham C, Riste L, Fisher L, Lovell K, Peters S, Wearden A. Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies. BMC Fam Pract. 2014 Mar 7;15:44. doi: 10.1186/1471-2296-15-44. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3973969/ (Full article)

 

Chronic fatigue syndrome: a personalized integrative medicine approach

Abstract:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common illness, yet despite considerable investigation, current treatments have modest benefits, and the prognosis remains poor. Because CFS/ME is a heterogeneous disorder with diverse etiological factors and pathological features, a patient-centered integrative framework based on modifiable physiological and environmental factors may offer hope for more effective management and better clinical outcomes. An individualized approach may also help target interventions for subgroups most likely to respond to specific treatments. This review summarizes a number of avenues for integrative management, including dietary modification, functional nutritional deficiencies, physical fitness, psychological and physical stress, environmental toxicity, gastrointestinal disturbances, immunological aberrations, inflammation, oxidative stress, and mitochondrial dysfunction. A personalized, integrative approach to CFS/ME deserves further consideration as a template for patient management and future research.

 

Source: Brown B. Chronic fatigue syndrome: a personalized integrative medicine approach. Altern Ther Health Med. 2014 Jan-Feb;20(1):29-40. https://www.ncbi.nlm.nih.gov/pubmed/24445354

 

News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS

The Centers for Disease Control and Prevention (CDC), Division of High-Consequence Pathogens and Pathology, Chronic Viral Diseases Branch houses CDC’s chronic fatigue syndrome (CFS) research and education program. The program’s provider education and outreach initiative has conducted research and implemented activities to educate healthcare professionals about CFS diagnosis and management, including evaluating knowledge, attitudes, and beliefs among US providers [1], assessing best methods for CFS continuing medical education (CME) [2], and developing a train-the-trainer program [3]. In 2012, meetings with stakeholders and evaluations of existing outreach efforts informed the program’s decision to target medical students and residents as a way to influence CFS education at the beginning of the medical education process. This report describes the background and process for developing a CFS education curriculum using standardized patients and plans to disseminate the curriculum using MedEd Portal.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/

 

Source: Brimmer DJ, Campbell C, Bonner K, Lin JM. News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS. Transl Behav Med. 2013 Dec;3(4):338-9. doi: 10.1007/s13142-013-0229-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/ (Full article)