Phantom limb pain following amputation is highly prevalent as it affects up to 80% of amputees. Many amputees suffer from phantom limb pain for many years and experience major limitations in daily routines and quality of life. Conventional pharmacological interventions often have negative side-effects and evidence regarding their long-term efficacy is low. Central malplasticity such as the invasion of areas neighbouring the cortical representation of the amputated limb contributes to the occurrence and maintenance of phantom limb pain. In this context, alternative, non-pharmacological interventions such as mirror therapy that are thought to target these central mechanisms have gained increasing attention in the treatment of phantom limb pain. However, a standardized evidence-based treatment protocol for mirror therapy in patients with phantom limb pain is lacking, and evidence for its effectiveness is still low. Furthermore, given the chronic nature of phantom limb pain and suggested central malplasticity, published studies proposed that patients should self-deliver mirror therapy over several weeks to months to achieve sustainable effects. To achieve this training intensity, patients need to perform self-delivered exercises on a regular basis, which could be facilitated though the use of information and communication technology such as telerehabilitation. However, little is known about potential benefits of using telerehabilitation in patients with phantom limb pain, and controlled clinical trials investigating effects are lacking. The present thesis presents the findings from the ‘PAtient Centered Telerehabilitation’ (PACT) project, which was conducted in three consecutive phases: 1) creating a theoretical foundation; 2) modelling the intervention; and 3) evaluating the intervention in clinical practice. The objectives formulated for the three phases of the PACT project were: 1) to conduct a systematic review of the literature regarding important clinical aspects of mirror therapy. It focused on the evidence of applying mirror therapy in patients with stroke, complex regional pain syndrome and phantom limb pain. 2) to design and develop a clinical framework and a user-centred telerehabilitation for mirror therapy in patients with phantom limb pain following lower limb amputation. 3) to evaluate the effects of the clinical framework for mirror therapy and the additional effects of the teletreatment in patients with phantom limb pain. It also investigated whether the interventions were delivered by patients and therapists as intended.
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ABSTRACT Purpose: To gain insight into determinants of physical activity in wheelchair users with spinal cord injury or lower limb amputation, from the perspective of both wheelchair users and rehabilitation professionals. Methods: Seven focus groups were conducted: five with wheelchair users (n=25) and two with rehabilitation professionals (n¼11). The transcripts were analysed using a sequential coding strategy, in which the reported determinants of physical activity were categorized using the Physical Activity for people with a Disability (PAD) model. Results: Reported personal determinants of physical activity were age, general health status, stage of life, demotivation due to difficulty burning calories, available time and energy, balance in daily life, attitude, and history of a physically active lifestyle. Reported environmental determinants were professional guidance, inconvenient exercise times, accessibility of facilities, costs, transportation difficulties, equipment difficulties, and social support. Conclusions: Important, changeable determinants of physical activity that might be influenced in future lifestyle interventions for wheelchair users are: balance in daily life leading to more time and energy to exercise, attitude towards physical activity, professional guidance, accessibility of facilities (providing information on how and where to find accessible facilities), and social support (learning how to get this)
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This study is part of the WHeelchair ExercisE and Lifestyle Study (WHEELS) project and aims to identify determinants of dietary behaviour in wheelchair users with spinal cord injury or lower limb amputation, from the perspectives of both wheelchair users and rehabilitation professionals. Results of focus groups with wheelchair users (n = 25) and rehabilitation professionals (n = 11) are presented using an integrated International Classification of Functioning, Disability and Health and Attitude, Social influence and self-Efficacy model as theoretical framework.
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Wheelchair users with a spinal cord injury (SCI) or amputation generally lead an inactive lifestyle, associated with reduced fitness and health. Digital interventions and sport and lifestyle applications (E-platforms) may be helpful in achieving a healthy lifestyle. Despite the potential positive effects of E-platforms in the general population, no studies are known investigating the effects for wheelchair users and existing E-platforms can not be used to the same extent and in the same manner by this population due to differences in physiology, body composition, exercise forms and responses, and risk injury. It is, therefore, our aim to adapt an existing E-platform (Virtuagym) within this project by using existing data collections and new data to be collected within the project. To reach this aim we intend to make several relevant databases from our network available for analysis, combine and reanalyze these existing databases to adapt the existing E-platform enabling wheelchair users to use it, evaluate and improve the use of the adapted E-platform, evaluate changes in healthy active lifestyle parameters, fitness, health and quality of life in users of the E-platform (both wheelchair users and general population) and identify determinants of these changes, identify factors affecting transitions from an inactive lifestyle, through an intermediate level, to an athlete level, comparing wheelchair users with the general population, and comparing Dutch with Brazilian individuals. The analysis of large datasets of exercise and fitness data from various types of individuals with and without disabilities, collected over the last years both in the Netherlands and Brazil, is an innovative and potentially fruitful approach. It is expected that the comparison of e.g. wheelchair users in Amsterdam vs. Sao Paulo or recreative athletes vs. elite athletes provides new insight in the factors determining a healthy and active lifestyle.
Wheelchair users with a spinal cord injury (SCI) or amputation generally lead an inactive lifestyle, associated with reduced fitness and health. Digital interventions and sport and lifestyle applications (E-platforms) may be helpful in achieving a healthy lifestyle. Despite the potential positive effects of E-platforms in the general population, no studies are known investigating the effects for wheelchair users and existing E-platforms can not be used to the same extent and in the same manner by this population due to differences in physiology, body composition, exercise forms and responses, and risk injury. It is, therefore, our aim to adapt an existing E-platform (Virtuagym) within this project by using existing data collections and new data to be collected within the project. To reach this aim we intend to make several relevant databases from our network available for analysis, combine and reanalyze these existing databases to adapt the existing E-platform enabling wheelchair users to use it, evaluate and improve the use of the adapted E-platform, evaluate changes in healthy active lifestyle parameters, fitness, health and quality of life in users of the E-platform (both wheelchair users and general population) and identify determinants of these changes, identify factors affecting transitions from an inactive lifestyle, through an intermediate level, to an athlete level, comparing wheelchair users with the general population, and comparing Dutch with Brazilian individuals. The analysis of large datasets of exercise and fitness data from various types of individuals with and without disabilities, collected over the last years both in the Netherlands and Brazil, is an innovative and potentially fruitful approach. It is expected that the comparison of e.g. wheelchair users in Amsterdam vs. Sao Paulo or recreative athletes vs. elite athletes provides new insight in the factors determining a healthy and active lifestyle.
