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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Non-pharmacological interventions such as mirror therapy are gaining increased recognition in the treatment of phantom limb pain; however, the evidence in people with phantom limb pain is still weak. In addition, compliance to self-delivered exercises is generally low. The aim of this randomised controlled study is to investigate the effectiveness of mirror therapy supported by telerehabilitation on the intensity, duration and frequency of phantom limb pain and limitations in daily activities compared to traditional mirror therapy and care as usual in people following lower limb amputation.
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OBJECTIVE: To analyse the prevalence of phantom (limb) pain over time and to analyse factors associated with phantom (limb) pain in a prospective cohort of amputees.DESIGN: A multicentre longitudinal study.PATIENTS: One hundred and thirty-four patients scheduled for amputation were included.METHODS: Patients filled in questionnaires before amputation, and postal questionnaires six months, 1(1/2) years and 2(1/2) years to a maximum of 3(1/2) years after amputation. Preoperative assessment included patients' characteristics, date, side and level of, and reason for amputation. The follow-up questionnaires assessed the frequencies of the experienced phantom pain, prosthetic use and walking distance. The occurrence of phantom pain was defined as phantom pain a few times a day or more frequently.RESULTS: Pre- and postoperative questionnaires were available filled in by 85 amputees (33 females and 52 males). The percentage of lower limb amputees with phantom pain was the highest at six months after amputation, and of upper limb amputees at 1(1/2) years. In general, more women than men experienced phantom pain. One and a half years and 2(1/2) years after amputation the highest percentages of the lower limb amputees used their prosthesis more than 4 hours a day (66%), after that time this percentage decreased to 60%. The results of the two-level logistic regression analysis to predict phantom pain show that phantom pain was less frequently present in men (odds ratio (OR) = 0.12), in lower limb amputees (OR = 0.14) and that it decreased in due course (OR = 0.53 for 1 year).CONCLUSION: Protective factors for phantom pain are: being male, having a lower limb amputation and the time elapsed since amputation.
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