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

Newton, JL; Mabillard, H; Scott, Anthony; Hoad, A; Spickett, Gavin P

doi:10.4997/jrcpe.2010.404

Cited by 31 publications

(35 citation statements)

References 11 publications

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“…UK patient data for our study were obtained from NHS specialist CFS services, in which an average of 80% of referred patients were diagnosed with CFS (Collin et al, 2012). Case note review has shown that 40-50% of referrals to such services could have alternative diagnoses, mainly of psychological or sleep disorders, or other chronic conditions (Devasahayam et al, 2012, Newton et al, 2010.…”

Section: Discussionmentioning

confidence: 99%

Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

Collin

Nikolaus

Heron

et al. 2016

Journal of Psychosomatic Research

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Objective: Studies have provided evidence of heterogeneity within chronic fatigue syndrome (CFS), but few have used data from large cohorts of CFS patients or replication samples.Methods: 29 UK secondary-care CFS services recorded the presence/absence of 12 CFS-related symptoms; 8 of these symptoms were recorded by a Dutch tertiary service. Latent Class Analysis (LCA) was used to assign symptom profiles (phenotypes). Regression models were fitted with phenotype as outcome (in relation to age, sex, BMI, duration of illness) and exposure (in relation to comorbidities and patient-reported measures).Results: Data were available for 7,041 UK and 1,392 Dutch patients. Almost all patients in both cohorts presented with post-exertional malaise, cognitive dysfunction and disturbed/unrefreshing sleep, and these 3 symptoms were excluded from LCA. In UK patients, six phenotypes emerged:'full' polysymptomatic (median 8, IQR 7-9 symptoms) 32.8%; 'pain-only' (muscle/joint) 20.3%; 'sore throat/painful lymph node' 4.5%; 'oligosymptomatic' (median 1, IQR 0-2 symptoms) 4.7%.Two 'partial' polysymptomatic phenotypes were similar to the 'full' phenotype, bar absence of dizziness/nausea/palpitations (21.4%) or sore throat/painful lymph nodes (16.3%). Women and patients with longer duration of illness were more likely to be polysymptomatic. Polysymptomatic patients had more severe illness and more comorbidities. LCA restricted to 5 symptoms recorded in both cohorts indicated 3 classes (polysymptomatic, oligosymptomatic, pain-only), which were replicated in Dutch data. Conclusions:Adults with CFS may have one of 6 symptom-based phenotypes associated with sex, duration and severity of illness, and comorbidity. Future research needs to determine whether phenotypes predict treatment outcomes, and require different treatments.

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Section: Discussionmentioning

confidence: 99%

Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

Collin

Nikolaus

Heron

et al. 2016

Journal of Psychosomatic Research

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“…Although knowledge and awareness of CFS/ME in primary care has improved over the past decade [27], some GPs still lack confidence in diagnosing CFS/ME [28]. This is consistent with a relatively high rate of misdiagnosis by GPs when referring to specialist services [29, 30]. The estimated incidence of adult CFS/ME diagnoses in CPRD data in the period 2008–2010 was broadly consistent with incidence estimated from data obtained directly from NHS specialist CFS/ME services in 2009, which gives some reassurance that CFS/ME diagnoses recorded by GPs towards the end of the period covered by our study were made or confirmed by a specialist CFS/ME service [7].…”

Section: Discussionmentioning

confidence: 82%

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

et al. 2017

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BackgroundOur aim was to investigate patterns of health care resource use by patients before and after a diagnosis of CFS/ME, as recorded by Clinical Practice Research Datalink (CPRD) GP practices in the UK.MethodsWe used a case–control study design in which patients who had a first recorded diagnosis of CFS/ME during the period 01/01/2001 to 31/12/2013 were matched 1:1 with controls by age, sex, and GP practice. We compared rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms between the two groups from 15 years (in adults) or 10 years (in children) before diagnosis to 10 years after diagnosis.ResultsData were available for 6710 adult and 916 child (age <18 years) matched case–control pairs. Rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms spiked dramatically in the year when a CFS/ME diagnosis was recorded. GP consultation rates were 50% higher in adult cases compared to controls 11–15 years before diagnosis (rate ratio (RR) 1.49 (95% CI 1.46, 1.52)) and 56% higher 6–10 years after diagnosis (RR 1.56 (1.54, 1.57)). In children, consultation rates in cases were 45% higher 6–10 years before diagnosis (RR 1.45 (1.40, 1.51)) and 62% higher 6–10 years after diagnosis (RR 1.62 (1.54, 1.70)). For adults and children, rates of tests, prescriptions, referrals, and symptoms were higher in cases compared to controls for up to 10 years before and after diagnosis.ConclusionsAdults and children with CFS/ME have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-017-0635-z) contains supplementary material, which is available to authorized users.

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“…This study has highlighted that the novel service being delivered in the Newcastle CRESTA addresses a considerable unmet need. A recent audit of our CFS NHS Clinical Service confirmed that 40% of those referred with a presumed diagnosis of CFS did not meet the diagnostic criteria for this condition but had fatigue related to other conditions . In addition, there is considerable recognition that the increase in chronic disease is likely to have a significant burden upon health‐care utilization in the coming decades.…”

Section: Discussionmentioning

confidence: 99%

A concept mapping study evaluating the UK's first NHS generic fatigue clinic

Hackett

Lambson

Strassheim

et al. 2015

Health Expectations

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ImportanceFatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2–0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focussed upon CFS and excluded the majority of fatigued patients who did not meet the CFS diagnostic criteria. The CRESTA Fatigue interdisciplinary clinic was established in 2013 in response to this unmet need.ObjectiveTo identify the service needs of the heterogeneous group of patients accessing the CRESTA Fatigue Clinic, to prioritize these needs, to determine whether each is being met and to plan targeted service enhancements.DesignUsing a group concept mapping approach, we objectively identified the shared understanding of service users accessing this novel clinic.Setting NHS Clinics for Research & Service in Themed Assessment (CRESTA) Fatigue Clinic, Newcastle Upon Tyne, UK.ParticipantsPatients (n = 30) and referrers (n = 10) to the CRESTA Fatigue Clinic contributed towards a statement generation exercise to identify ways the clinic could support service users to improve their quality of life. Patients (n = 46) participated in the sorting and rating task where resulting statements were sorted into groups similar in meaning and rated for ‘importance’ and ‘current success’.Main outcome and measureWe mapped the needs of patients attending the CRESTA Fatigue Clinic and identified which high‐priority needs were being successfully met and which were not.ResultsMultidimensional scaling and hierarchical cluster analysis depicted the following eight themed clusters from the data which related to various service‐user requirements: ‘clinic ethos’, ‘communication’, ‘support to self‐manage’, ‘peer support’, ‘allied health services’, ‘telemedicine’, ‘written information’ and ‘service operation’. Service improvement targets were identified within value bivariate plots of the statements.Conclusion and RelevanceService development concepts were grouped into thematic clusters and prioritized for both importance and current success. The resulting concept maps depict where the CRESTA Fatigue Clinic successfully addresses issues which matter to patients and highlights areas for service enhancement. Unmet needs of patients have been identified in a rigorous service evaluation, and these are currently being addressed in collaboration with a service‐user group.

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

Cited by 31 publications

References 11 publications

Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

A concept mapping study evaluating the UK's first NHS generic fatigue clinic

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