scholarly journals Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Emma Anderson ◽  
Roxanne Parslow ◽  
William Hollingworth ◽  
Nicola Mills ◽  
Lucy Beasant ◽  
...  
Keyword(s):  
United Kingdom ◽  
Young People ◽  
Controlled Trial ◽  
Chronic Fatigue ◽  
Outcome Data ◽  
The Internet ◽  
Web Based ◽  
Fatigue Syndrome ◽  
The United Kingdom ◽  
Specialist Treatment

BACKGROUND Chronic 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. OBJECTIVE This 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). METHODS This 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. RESULTS A 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. CONCLUSIONS Recruiting 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. CLINICALTRIAL ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 INTERNATIONAL REGISTERED REPORT RR2-10.1186/s13063-018-2500-3

scholarly journals Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial

10.2196/17768 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e17768
Author(s):  
Emma Anderson ◽  
Roxanne Parslow ◽  
William Hollingworth ◽  
Nicola Mills ◽  
Lucy Beasant ◽  
...  
Keyword(s):  
United Kingdom ◽  
Young People ◽  
Controlled Trial ◽  
Chronic Fatigue ◽  
Outcome Data ◽  
The Internet ◽  
Web Based ◽  
Fatigue Syndrome ◽  
The United Kingdom ◽  
Specialist Treatment

Background Chronic 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. Objective This 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). Methods This 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. Results A 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. Conclusions Recruiting 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 Registration ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 International Registered Report Identifier (IRRID) RR2-10.1186/s13063-018-2500-3

scholarly journals Qualitative Evaluation of Web-Based Digital Intervention to Prevent and Reduce Excessive Alcohol Use and Harm Among Young People Aged 14-15 Years: A “Think-Aloud” Study

10.2196/19749 ◽  
2020 ◽  
Vol 3 (2) ◽  
pp. e19749
Author(s):  
Laura Elizabeth Tinner ◽  
Eileen Kaner ◽  
Claire Garnett ◽  
Siobhan Mitchell ◽  
Matthew Hickman ◽  
...  
Keyword(s):  
United Kingdom ◽  
Alcohol Use ◽  
Young People ◽  
Think Aloud ◽  
Youth Workers ◽  
Short Term ◽  
Web Based ◽  
The United Kingdom ◽  
Social Pressures ◽  
Excessive Alcohol

Background In the United Kingdom, despite some downward trends in alcohol use among young people, over one-fifth of young people reported excessive alcohol use in the past month, which is associated with short- and long-term harm to health. Digital interventions to reduce alcohol use, such as websites, among young people present an appealing and cost-effective mode of intervention that can be integrated into the education system. However, relatively few school-based digital alcohol-focused interventions have been developed and evaluated for young people in the United Kingdom. Objective This study aims to develop a novel web-based intervention, Rethink Alcohol, to prevent and reduce excessive alcohol use and related harm among young people aged between 14 and 15 years, and explore the views of young people, teachers, and youth workers in relation to the content, design, and usability of the intervention. Methods Intervention development followed the person-based approach, using theories of social norms and social influence. Qualitative “Think-Aloud” interviews, either one-to-one or paired, were conducted while participants perused and worked through the web-based intervention, talking aloud. Participants included 20 young people (12 female, 8 male), 5 youth workers (4 female, 1 male), 3 teachers (2 male, 1 female), and 1 (male) clinical professional, recruited via youth groups and professional networks. Interviews were audio recorded, transcribed verbatim, and analyzed thematically. Results The prototype web-based intervention included normative feedback, information, a quiz, interactive activities, and scenarios. On a rating scale of impressions from poor (1) to excellent (5), participants gave an average score of 3.6/5. A total of 5 themes were identified: content, credibility of the website, making the website easy to understand, design and navigation, and suitability for the audience. These themes reflected views that the content was interesting, credible, informative, and embodied a neutral and nonjudgmental tone, but stronger messaging was needed regarding social pressures and short-term risks regarding safety and risk behavior alongside clarity around pathways of risk; credibility and trustworthiness of information were critical features, determined in part, by the professionalism of design and referencing of sources of information provided; and messages should be succinct and come to life through design and interactive features. Conclusions Together, the data illustrated the importance and challenge of communicating nuanced alcohol-focused public health messages to young people in concise, clear, nonjudgmental, and appealing ways. Young people report interest in clear, credible, neutral, and interactive messages regarding social pressures and short-term risks of alcohol use via a web-based intervention. There is scope for optimization and feasibility testing of the Rethink Alcohol intervention.

Building and Connecting to Online Communities for Action

2012 ◽  
pp. 114-132
Author(s):  
Philippa Collin
Keyword(s):  
United Kingdom ◽  
Young People ◽  
Case Studies ◽  
Critical Analysis ◽  
Communication Technologies ◽  
The Internet ◽  
Original Research ◽  
Information Communication Technologies ◽  
Information Communication ◽  
The United Kingdom

Young people are using information communication technologies (ICT) for new forms of political participation. At the same time, government and non-government organisations are looking to the internet to implement policies designed to engage young people in democracy. This raises the question of what forms of e-citizenship are being imposed on young people and are these same forms being pursued by young people themselves? Coleman (2008) has suggested that programs tend to promote autonomous or managed forms and argues for a ‘productive convergence’ that can facilitate democratic e-citizenship. Using original research, this article presents two case studies of such a ‘productive convergence’ and argues that what is particularly powerful in such e-citizenship programs is that they facilitate young people’s connection to existing networks as well as the building of new communities for action. This article presents a critical analysis of how organisations and young people in Australia and the United Kingdom view and use the internet for participation and considers the extent to which there is increased democratising potential in these e-citizenship programs.

Building and Connecting to Online Communities for Action

2010 ◽  
Vol 1 (3) ◽  
pp. 1-18 ◽  
Author(s):  
Philippa Collin
Keyword(s):  
United Kingdom ◽  
Young People ◽  
Case Studies ◽  
Critical Analysis ◽  
Communication Technologies ◽  
The Internet ◽  
Original Research ◽  
Information Communication Technologies ◽  
Information Communication ◽  
The United Kingdom

Young people are using information communication technologies (ICT) for new forms of political participation. At the same time, government and non-government organisations are looking to the internet to implement policies designed to engage young people in democracy. This raises the question of what forms of e-citizenship are being imposed on young people and are these same forms being pursued by young people themselves? Coleman (2008) has suggested that programs tend to promote autonomous or managed forms and argues for a ‘productive convergence’ that can facilitate democratic e-citizenship. Using original research, this article presents two case studies of such a ‘productive convergence’ and argues that what is particularly powerful in such e-citizenship programs is that they facilitate young people’s connection to existing networks as well as the building of new communities for action. This article presents a critical analysis of how organisations and young people in Australia and the United Kingdom view and use the internet for participation and considers the extent to which there is increased democratising potential in these e-citizenship programs.

scholarly journals Results of the feasibility phase of the managed activity graded exercise in teenagers and pre-adolescents (MAGENTA) randomised controlled trial of treatments for chronic fatigue syndrome/myalgic encephalomyelitis

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Amberly Brigden ◽  
Lucy Beasant ◽  
Daisy Gaunt ◽  
William Hollingworth ◽  
Nicola Mills ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Chronic Fatigue Syndrome ◽  
Young People ◽  
Controlled Trial ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Fatigue Syndrome ◽  
Graded Exercise ◽  
Activity Management ◽  
Randomised Controlled

Abstract Background Chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis (ME) is relatively common in young people and causes significant disability. Graded exercise therapy (GET) and activity management are recommended by the National Institute for Health and Care Excellence (NICE) despite a limited evidence-base for either treatment in paediatric CFS/ME. This paper reports on feasibility and acceptability measures from the feasibility phase of the ongoing MAGENTA randomised controlled trial (RCT) investigating GET versus activity management for young people with CFS/ME. Methods Setting: Three specialist secondary care National Health Service (NHS) Paediatric CFS/ME services (Bath, Cambridge and Newcastle). Participants: Young people aged 8–17 years with a diagnosis of mild to moderate CFS/ME. Young people were excluded if they were severely affected, referred to cognitive behavioural therapy (CBT) at initial assessment or unable to attend clinical sessions. Interventions: GET and activity management delivered by physiotherapists, occupational therapists, nurses and psychologists. Families and clinicians decided the number (typically 8–12) and frequency of appointments (typically every 2–6 weeks). Outcome Measures: Recruitment and follow-up statistics. We used integrated qualitative methodology to explore the feasibility and acceptability of the trial processes and the interventions. Results 80/161 (49.7%) of eligible young people were recruited at two sites between September 2015 and August 2016, indicating recruitment to the trial was feasible. Most recruitment (78/80; 97.5%) took place at one centre. Recruitment consultations, online consent and interventions were acceptable, with less than 10% in each arm discontinuing trial treatment. Response rate to the primary outcome (the SF36-PFS at 6 months) was 91.4%. Recruitment, treatment and data collection were not feasible at one centre. The site was withdrawn from the study. In response to data collected, we optimised trial processes including using Skype for recruitment discussions; adapting recruiter training to improve recruitment discussions; amending the accelerometer information leaflets; shortening the resource use questionnaires; and offering interventions via Skype. These amendments have been incorporated into the full trial protocol. Conclusions Conducting an RCT investigating GET versus activity management is feasible and acceptable for young people with CFS/ME. Trial registration ISRCTN23962803 10.1186/ISRCTN23962803, date of registration: 03 September 2015

The awareness of chronic fatigue syndrome: A comparative study in Brazil and the United Kingdom

2008 ◽  
Vol 64 (4) ◽  
pp. 351-355 ◽  
Author(s):  
Hyong Jin Cho ◽  
Paulo Rossi Menezes ◽  
Dinesh Bhugra ◽  
Simon Wessely
Keyword(s):  
United Kingdom ◽  
Chronic Fatigue Syndrome ◽  
Comparative Study ◽  
Chronic Fatigue ◽  
Fatigue Syndrome ◽  
The United Kingdom

scholarly journals Qualitative Evaluation of Web-Based Digital Intervention to Prevent and Reduce Excessive Alcohol Use and Harm Among Young People Aged 14-15 Years: A “Think-Aloud” Study (Preprint)

2020 ◽  
Author(s):  
Laura Elizabeth Tinner ◽  
Eileen Kaner ◽  
Claire Garnett ◽  
Siobhan Mitchell ◽  
Matthew Hickman ◽  
...  
Keyword(s):  
United Kingdom ◽  
Alcohol Use ◽  
Young People ◽  
Think Aloud ◽  
Youth Workers ◽  
Short Term ◽  
Web Based ◽  
The United Kingdom ◽  
Social Pressures ◽  
Excessive Alcohol

BACKGROUND In the United Kingdom, despite some downward trends in alcohol use among young people, over one-fifth of young people reported excessive alcohol use in the past month, which is associated with short- and long-term harm to health. Digital interventions to reduce alcohol use, such as websites, among young people present an appealing and cost-effective mode of intervention that can be integrated into the education system. However, relatively few school-based digital alcohol-focused interventions have been developed and evaluated for young people in the United Kingdom. OBJECTIVE This study aims to develop a novel web-based intervention, <i>Rethink Alcohol</i>, to prevent and reduce excessive alcohol use and related harm among young people aged between 14 and 15 years, and explore the views of young people, teachers, and youth workers in relation to the content, design, and usability of the intervention. METHODS Intervention development followed the person-based approach, using theories of social norms and social influence. Qualitative “Think-Aloud” interviews, either one-to-one or paired, were conducted while participants perused and worked through the web-based intervention, talking aloud. Participants included 20 young people (12 female, 8 male), 5 youth workers (4 female, 1 male), 3 teachers (2 male, 1 female), and 1 (male) clinical professional, recruited via youth groups and professional networks. Interviews were audio recorded, transcribed verbatim, and analyzed thematically. RESULTS The prototype web-based intervention included normative feedback, information, a quiz, interactive activities, and scenarios. On a rating scale of impressions from poor (1) to excellent (5), participants gave an average score of 3.6/5. A total of 5 themes were identified: content, credibility of the website, making the website easy to understand, design and navigation, and suitability for the audience. These themes reflected views that the content was interesting, credible, informative, and embodied a neutral and nonjudgmental tone, but stronger messaging was needed regarding social pressures and short-term risks regarding safety and risk behavior alongside clarity around pathways of risk; credibility and trustworthiness of information were critical features, determined in part, by the professionalism of design and referencing of sources of information provided; and messages should be succinct and come to life through design and interactive features. CONCLUSIONS Together, the data illustrated the importance and challenge of communicating nuanced alcohol-focused public health messages to young people in concise, clear, nonjudgmental, and appealing ways. Young people report interest in clear, credible, neutral, and interactive messages regarding social pressures and short-term risks of alcohol use via a web-based intervention. There is scope for optimization and feasibility testing of the <i>Rethink Alcohol</i> intervention.

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