The hidden cost of chronic fatigue to patients and their families

Sabés-Figuera, Ramón; McCrone, Paul; Hurley, Mike; King, Michael; Donaldson, Ana Nora; Ridsdale, Leone

doi:10.1186/1472-6963-10-56

Cited by 54 publications

(59 citation statements)

References 19 publications

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“…77 In this British study, unpaid informal care accounted for as much as 26.4%, while productivity losses represented 60.6% and health care expenses, only 13%.…”

Section: Therapymentioning

confidence: 62%

Chronic fatigue syndrome – an update

Rimbaut

Gutte

Brabander

et al. 2016

Acta Clinica Belgica

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Despite extensive research, none of the proposed etiological factors have shown strong, reproducible scientific evidence. Over the years, the biopsychosocial model integrating many of the proposed hypotheses has been gaining popularity over the biomedical model, where the focus is on one physical cause. Since the etiological mechanism underlying chronic fatigue syndrome is currently unknown, disease-specific treatments do not exist. Various treatments have been investigated but only cognitive behavior therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness.

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“…77 In this British study, unpaid informal care accounted for as much as 26.4%, while productivity losses represented 60.6% and health care expenses, only 13%.…”

Section: Therapymentioning

confidence: 62%

Chronic fatigue syndrome – an update

Rimbaut

Gutte

Brabander

et al. 2016

Acta Clinica Belgica

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“…CFS imposes a huge burden on patients, carers and families (Horton et al, 2010, Nacul et al, 2011, Sabes-Figuera et al, 2010. In the UK, adults who attend NHS specialist CFS services have been ill for a median duration of 3 years, and half of those who were employed at the onset of their illness have ceased working (Collin et al, 2011).…”

Section: Introductionmentioning

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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“…CFS/ME imposes an immense burden on patients, carers and families [2, 3]. In the UK, adults who attend NHS specialist CFS/ME services have been ill for a median duration of 3 years, and half of those employed at the onset of their illness cease working [4].…”

Section: Introductionmentioning

confidence: 99%

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

Collin

Crawley

2017

BMC Health Serv Res

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BackgroundNHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described.MethodsWe described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2–5 years after assessment at 7 of the 11 specialist services.ResultsBaseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was ‘very much’ or ‘much better’ for 27.5% (115/418) of patients, ‘a little better’ for 36.6% (153/418), ‘no change’ for 15.8% (66/418), ‘a little worse’ for 12.2% (51/418), and ‘worse’ or ‘very much worse’ for 7.9% (33/418). Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded “Yes” to “Do you think that you are still suffering from CFS/ME?” 8.9% (34/383) were “Uncertain”, and 5.7% (22/383) responded “No”.ConclusionsThis multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2437-3) contains supplementary material, which is available to authorized users.

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The hidden cost of chronic fatigue to patients and their families

Cited by 54 publications

References 19 publications

Chronic fatigue syndrome – an update

Chronic fatigue syndrome – an update

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

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

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