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.
DOCUMENT
Het ondergaan van een eenzijdige beenamputatie is een drastische chirurgische ingreep. Mensen, die na een amputatie in staat zijn om te lopen met een prothese, zijn functioneel onafhankelijker, en hebben een hogere kwaliteit van leven dan mensen die in een rolstoel belanden. Het is daarom niet verrassend dat het herwinnen van de oopvaardigheid één van de voornaamste doelen is tijdens de revalidatie. Doel van het onderzoek was om inzicht te krijgen in de factoren die het herwinnen en onderhouden van de loopvaardigheid van mensen na een beenamputatie beïnvloeden. Gebaseerd op de resultaten van het onderzoek kan geconcludeerd worden dat de fysieke capaciteit hierbij een belangrijke rol speelt. Een relatief kleine verbetering in de capaciteit kan al resulteren in significante en klinisch relevante verbeteringen. Hoewel geavanceerde prothesen de mechanische belasting van het lopen met een beenprothese verminderen, kan een ineffectieve balanscontrole deze positieve resultaten weer tenietdoen. ABSTRACT Undergoing a lower limb amputation is a life-changing surgery. The ability to walk greatly influences the subject's functional independence and quality of life. Not surprisingly, regaining walking ability is one of the primary goals during prosthetic rehabilitation. The primary aim of the research performed was to enhance our understanding of some of the factors that influence the ability to regain and maintain walking after a unilateral lower limb amputation. Based on the results we can deduce that a person's physical capacity plays an important role in their walking ability. Relatively small improvements in capacity could lead to significant and clinically relevant improvements in people's walking ability. Furthermore, results show that sophisticated prosthetic feet can reduce the mechanical load experienced when walking with a prosthesis. Interestingly, inefficient balance control strategies can undo any positive effect of these prostheses.
DOCUMENT
Objective: To compare the effects of traditional mirror therapy (MT), a patient-centred teletreatment (PACT) and sensomotor exercises without a mirror on phantom limb pain (PLP). Design: Three-arm multicentre randomized controlled trial. Setting: Rehabilitation centres, hospital and private practices. Subjects: Adult patients with unilateral lower limb amputation and average PLP intensity of at least 3 on the 0–10 Numeric Rating Scale (NRS). Interventions: Subjects randomly received either four weeks of traditional MT followed by a teletreatment using augmented reality MT, traditional MT followed by self-delivered MT or sensomotor exercises of the intact limb without a mirror followed by self-delivered exercises. Main measures: Intensity, frequency and duration of PLP and patient-reported outcomes assessing limitations in daily life at baseline, 4 weeks, 10 weeks and 6 months. Results: In total, 75 patients received traditional MT (n = 25), teletreatment (n = 26) or sensomotor exercises (n = 24). Mean (SD) age was 61.1 (14.2) years and mean (SD) pain intensity was 5.7 (2.1) on the NRS. Effects of MT at four weeks on PLP were not significant. MT significantly reduced the duration of PLP at six months compared to the teletreatment (P = 0.050) and control group (P = 0.019). Subgroup analyses suggested significant effects on PLP in women, patients with telescoping and patients with a motor component in PLP. The teletreatment had no additional effects compared to self-delivered MT at 10 weeks and 6 months. Conclusion: Traditional MT over four weeks was not more effective than sensomotor exercises without a mirror in reducing PLP, although significant effects were suggested in some subgroups.
DOCUMENT
PURPOSE: Walking ability in general and specifically for lower limb amputees is of major importance for social mobility and ADL independence. Walking determines prosthesis prescription. The aim of this study was to mathematically analyse factors influencing claimed walking distance of lower limb amputees of 500 m or more.METHOD: A total of 437 patients returned two questionnaires: the Groningen Questionnaire Problems after Leg Amputation, in which walking distance was assessed, and the RAND 36.RESULTS: The chance of walking 500 m or more reduced when a transfemoral amputation was performed. The chance reduced even more when phantom pain or stump pains were present. If the amputation was performed because of vascular disease or because of vascular problems because of diabetes the chance reduced again. Independently of these factors, age reduced the chance of walking 500 m or more.CONCLUSION: The chance of walking 500 m or more reduces with increase in age and a more proximal amputation. The chance reduces even further when the amputation is performed because of diabetes or vascular disease and also if phantom pain and or stump pain is present.
DOCUMENT
Background:Current technology innovations, such as wearables, have caused surprising reactions and feelings of deep connection to devices. Some researchers are calling mobile and wearable technologies cognitive prostheses, which are intrinsically connected to individuals as if they are part of the body, similar to a physical prosthesis. Additionally, while several studies have been performed on the phenomenology of receiving and wearing a physical prosthesis, it is unknown whether similar subjective experiences arise with technology.Objective:In one of the first qualitative studies to track wearables in a longitudinal investigation, we explore whether a wearable can be embodied similar to a physical prosthesis. We hoped to gain insights and compare the phases of embodiment (ie, initial adjustment to the prosthesis) and the psychological responses (ie, accept the prosthesis as part of their body) between wearables and limb prostheses. This approach allowed us to find out whether this pattern was part of a cyclical (ie, period of different usage intensity) or asymptotic (ie, abandonment of the technology) pattern.Methods:We adapted a limb prosthesis methodological framework to be applied to wearables and conducted semistructured interviews over a span of several months to assess if, how, and to what extent individuals come to embody wearables similar to prosthetic devices. Twelve individuals wore fitness trackers for 9 months, during which time interviews were conducted in the following three phases: after 3 months, after 6 months, and at the end of the study after 9 months. A deductive thematic analysis based on Murray’s work was combined with an inductive approach in which new themes were discovered.Results:Overall, the individuals experienced technology embodiment similar to limb embodiment in terms of adjustment, wearability, awareness, and body extension. Furthermore, we discovered two additional themes of engagement/reengagement and comparison to another device or person. Interestingly, many participants experienced a rarely reported phenomenon in longitudinal studies where the feedback from the device was counterintuitive to their own beliefs. This created a blurring of self-perception and a dilemma of “whom” to believe, the machine or one’s self.Conclusions:There are many similarities between the embodiment of a limb prosthesis and a wearable. The large overlap between limb and wearable embodiment would suggest that insights from physical prostheses can be applied to wearables and vice versa. This is especially interesting as we are seeing the traditionally “dumb” body prosthesis becoming smarter and thus a natural merging of technology and body. Future longitudinal studies could focus on the dilemma people might experience of whether to believe the information of the device over their own thoughts and feelings. These studies might take into account constructs, such as technology reliance, autonomy, and levels of self-awareness.
DOCUMENT
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.
DOCUMENT
Assistive technology supports maintenance or improvement of an individual’s functioning and independence, though for people in need the access to assistive products is not always guaranteed. This paper presents a generic quality framework for assistive technology service delivery that can be used independent of the setting, context, legislative framework, or type of technology. Based on available literature and a series of discussions among the authors, a framework was developed. It consists of 7 general quality criteria and four indicators for each of these criteria. The criteria are: accessibility; competence; coordination; efficiency; flexibility; user centeredness, and infrastructure. This framework can be used at a micro level (processes around individual users), meso level (the service delivery scheme or programme) or at a macro level (the whole country). It aims to help identify in an easy way the main strengths and weaknesses of a system or process, and thus guide possible improvements. As a next step in the development of this quality framework the authors propose to organise a global consultancy process to obtain responses from stakeholders across the world and to plan a number of case studies in which the framework is applied to different service delivery systems and processes in different countries.
DOCUMENT
Binnen het Raak Pro project ‘Praten kan ik niet …, maar communiceren wil ik wel’ hebben we onderzoek gedaan naar het gebruik van Communicatie Ondersteunende Hulpmiddelen (COH) bij kinderen/jongeren met ernstige communicatieve en meervoudige beperkingen. Het ging om kinderen/jongeren die niet, nauwelijks of zeer slecht verstaanbaar spreken vanwege hun meervoudige beperkingen. We onderzochten hoe zij en mensen in hun omgeving, bijvoorbeeld ouders, leraren en/of behandelaars geholpen konden worden bij het zoeken, selecteren en inzetten van de best passende en meest adequate hulpmiddelen om de communicatie van het kind/de jongere te ondersteunen en verder te ontwikkelen. Goede, optimaal aangepaste hulmiddelen, methoden en technieken voor communicatieondersteuning vergroten de mogelijkheden en kansen van deze kinderen en jongeren om meer (zelf)redzaam te worden, meer regie te hebben over eigen kwaliteit van leven en meer succesvol deel te nemen aan verschillende activiteiten in allerlei sociale en maatschappelijke contexten: thuis, op school, in dagbesteding of werk en in de vrije tijd. Hiervoor is een Routekaart ontwikkeld. Onderdeel van de Routekaart is het proces van assessment waarin onderzocht wordt welke barrières/functioneringsproblemen het kind/de jongere ervaart bij het communiceren met anderen; wat zijn/haar behoeften en wensen zijn wat betreft het communiceren en welke mogelijkheden de persoon heeft om, eventueel met behulp van een COH, te kunnen communiceren in alledaagse levenssituaties.
DOCUMENT
