Graded Exercise Therapy Guided Self-Help Trial for Patients with Chronic Fatigue Syndrome (GETSET): Protocol for a Randomized Controlled Trial and Interview Study

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is characterized by chronic disabling fatigue and other symptoms, which are not explained by an alternative diagnosis. Previous trials have suggested that graded exercise therapy (GET) is an effective and safe treatment. GET itself is therapist-intensive with limited availability. Objective: While guided self-help based on cognitive behavior therapy appears helpful to patients, Guided graded Exercise Self-help (GES) is yet to be tested. Methods: This pragmatic randomized controlled trial is set within 2 specialist CFS/ME services in the South of England. Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation. GES will consist of a structured booklet describing a 6-step graded exercise program, supported by up to 4 face-to-face/telephone/Skype™ consultations with a GES-trained physiotherapist (no more than 90 minutes in total) over 8 weeks. The primary outcomes at 12-weeks after randomization will be physical function (SF-36 physical functioning subscale) and fatigue (Chalder Fatigue Questionnaire). Secondary outcomes will include healthcare costs, adverse outcomes, and self-rated global impression change scores. We will follow up all participants until 1 year after randomization. We will also undertake qualitative interviews of a sample of participants who received GES, looking at perceptions and experiences of those who improved and worsened. Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon. Conclusions: This study will indicate whether adding GES to SMC will benefit patients who often spend many months waiting for rehabilitative therapy with little or no improvement being made during that time. The study will indicate whether this type of guided self-management is cost-effective and safe. If this trial shows GES to be acceptable, safe, and comparatively effective, the GES booklet could be made available on the Internet as a practitioner and therapist resource for clinics to recommend, with the caveat that patients also be supported with guidance from a trained physiotherapist. The pragmatic approach in this trial means that GES findings will be generalizable to usual National Health Service (NHS) practice.

Men’s strategies for preserving emotional well-being in advanced prostate cancer: an interpretative phenomenological analysis

Objective This study explores men with advanced prostate cancers’ own practices for promoting and maintaining emotional well-being using Interpretative Phenomenological Analysis. Design Five men with advanced prostate cancer participated in face-to-face, semi-structured, in-depth interviews. Results Within rich narratives of lost and regained well-being, two super-ordinate themes emerged – ‘living with an imminent and uncertain death’ and ‘holding on to life.’ Well-being was threatened by reduced sense of the future, isolation and uncertainty. Yet, the men pursued well-being by managing their emotions, striving for the future whilst enjoying life in the present, taking care of their families and renegotiating purpose. Running through participant’s accounts was a preference for taking action and problem-solving. Sense of purpose, social connectedness and life-engagement were revealed as concepts central to improving well-being, indicating areas which practitioners could explore with men to help them re-establish personal goals and life-purpose. Conclusions The findings also add weight to the evidence base for the potential value of psychological interventions such as cognitive behaviour therapy and mindfulness in men with prostate cancer.

Digital anthropology and educational eGames: learning through behavioural patterns in digital, game-based contexts

The selected publications are focused on the relations between users, eGames and the educational context, and how they interact together, so that both learning and user performance are improved through feedback provision. A key part of this analysis is the identification of behavioural, anthropological patterns, so that users can be clustered based on their actions, and the steps taken in the system (e.g. social network, online community, or virtual campus). In doing so, we can analyse large data sets of information made by a broad user sample,which will provide more accurate statistical reports and readings. Furthermore, this research is focused on how users can be clustered based on individual and group behaviour, so that a personalized support through feedback is provided, and the personal learning process is improved as well as the group interaction. We take inputs from every person and from the group they belong to, cluster the contributions, find behavioural patterns and provide personalized feedback to the individual and the group, based on personal and group findings. And we do all this in the context of educational games integrated in learning communities and learning management systems. To carry out this research we design a set of research questions along the 10-year published work presented in this thesis. We ask if the users can be clustered together based on the inputs provided by them and their groups; if and how these data are useful to improve the learner performance and the group interaction; if and how feedback becomes a useful tool for such pedagogical goal; if and how eGames become a powerful context to deploy the pedagogical methodology and the various research methods and activities that make use of that feedback to encourage learning and interaction; if and how a game design and a learning design must be defined and implemented to achieve these objectives, and to facilitate the productive authoring and integration of eGames in pedagogical contexts and frameworks. We conclude that educational games are a resourceful tool to provide a user experience towards a better personalized learning performance and an enhance group interaction along the way. To do so, eGames, while integrated in an educational context, must follow a specific set of user and technical requirements, so that the playful context supports the pedagogical model underneath. We also conclude that, while playing, users can be clustered based on their personal behaviour and interaction with others, thanks to the pattern identification. Based on this information, a set of recommendations are provided Digital Anthropology and educational eGames 6 /216 to the user and the group in the form of personalized feedback, timely managed for an optimum impact on learning performance and group interaction level. In this research, Digital Anthropology is introduced as a concept at a late stage to provide a backbone across various academic fields including: Social Science, Cognitive Science, Behavioural Science, Educational games and, of course, Technology-enhance learning. Although just recently described as an evolution of traditional anthropology, this approach to digital behaviour and social structure facilitates the understanding amongst fields and a comprehensive view towards a combined approach. This research takes forward the already existing work and published research onusers and eGames for learning, and turns the focus onto the next step — the clustering of users based on their behaviour and offering proper, personalized feedback to the user based on that clustering, rather than just on isolated inputs from every user. Indeed, this pattern recognition in the described context of eGames in educational contexts, and towards the presented aim of personalized counselling to the user and the group through feedback, is something that has not been accomplished before.