Abstract
BackgroundChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment.ObjectiveThis study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial).MethodsThis study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments.ResultsA total of 89 out of 150 (59.3% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported.ConclusionsRecruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment.Trial RegistrationISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851International Registered Report Identifier (IRRID)RR2-10.1186/s13063-018-2500-3
Highlights
MethodsBetween 1% and 2.4% of children and teenagers are estimated to have chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) [1,2]
Delivering specialist treatment at home via the internet is feasible and acceptable, some families prefer to travel across the United Kingdom for face-to-face treatment
This study presents the findings of the initial 12-month internal pilot phase of the Fatigue in Teenagers on the InterNET (FITNET)-National Health Service (NHS) randomized controlled trial (RCT), which used entirely remote methods to recruit, randomize, and treat adolescents who were referred to a specialist pediatric Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) treatment service within a hospital in South West United Kingdom between November 1, 2016, to October 31, 2017
Summary
Between 1% and 2.4% of children and teenagers are estimated to have chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) [1,2]. Affected children and teenagers can have severe disability [3,4], and most of them have no access to specialist treatment in their locality. This situation forces children and teenagers to either remain untreated or travel long distances to access specialist care, which may exacerbate symptoms. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment
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