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

Abstract

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.

Pediatric chronic fatigue syndrome: current perspectives

“…Children with CFS/ME have an increase in medical consultations, tests, and prescriptions, up to five years before receiving a diagnosis. 8 Most children attending a specialist service attended 40% of school or less. 9 About one-third of them suffer from comorbid anxiety and/or depression.…”

Physical activity at age 11 years and chronic disabling fatigue at ages 13 and 16 years in a UK birth cohort

“…However, analysis of electronic primary care data in the UK showed that children with CFS/ME had substantially higher healthcare needs than matched population controls for at least 10 years before their diagnosis. 39 This suggests that parents have underestimated the duration of their child’s fatigue, or that paediatric CFS/ME begins in a mild form which develops into more severe CFS/ME. This is plausible if the milder form of CFS/ME does not lead to notable absences from school or college.…”

“The child’s got a complete circle around him”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’

“…CFS/ME has a significant impact on the lives of young people; it is associated with significant physical disability, school absences, social and emotional difficulties and some children have periods of being bedbound (Bould, Lewis, Emond, & Crawley, 2011; Carter, Edwards, Kronenberger, Michalczyk, & Marshall, 1995; Dowsett & Colby, 1997; Garralda & Rangel, 2004; Patel, Smith, Chalder, & Wessely, 2003). CFS/ME also affects the whole family (Velleman, Collin, Beasant, & Crawley, 2016) and is costly for the Health Service (NHS) (Collin, Bakken, Nazareth, Crawley, & White, 2017). Despite this, it is an overlooked and stigmatised condition (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012).…”