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.
Background: Phantom limb pain is a frequent and persistent problem following amputation. Achieving sustainable favorable effects on phantom limb pain requires therapeutic interventions such as mirror therapy that target maladaptive neuroplastic changes in the central nervous system. Unfortunately, patients’ adherence to unsupervised exercises is generally poor and there is a need for effective strategies such as telerehabilitation to support long-term self-management of patients with phantom limb pain. Objective: The main aim of this study was to describe the user-centered approach that guided the design and development of a telerehabilitation platform for patients with phantom limb pain. We addressed 3 research questions: (1) Which requirements are defined by patients and therapists for the content and functions of a telerehabilitation platform and how can these requirements be prioritized to develop a first prototype of the platform? (2) How can the user interface of the telerehabilitation platform be designed so as to match the predefined critical user requirements and how can this interface be translated into a medium-fidelity prototype of the platform? (3) How do patients with phantom limb pain and their treating therapists judge the usability of the medium-fidelity prototype of the telerehabilitation platform in routine care and how can the platform be redesigned based on their feedback to achieve a high-fidelity prototype?
Physiotherapy, Dietetics and Occupational Therapy have been collaborating over recent years to develop an optimal healthcare programme for patients with Post Intensive Care Syndrome (PICS). This case is an example of PICS symptomatology and focuses on the collaboration between Physiotherapy and Dietetics. What is PICS? Owing to healthcare improvements, more and more patients are surviving the intensive Care Unit (ICU), and recovery during and after ICU stay has been receiving more attention [1, 2]. Approximately 30% of the patients admitted to an ICU have persistent symptoms including muscle weakness, reduced walking ability, fatigue, concentration deficits, memory problems, malnutrition, sleep and mood disorders sometimes even years after discharge [3-8]. Since 2012, this combination of physical, cognitive and psychiatric manifestations and reduced quality of life after staying in an ICU has been recognised as Post Intensive Care Syndrome (PICS) [9]. The impact of PICS is often not limited to the patient as it may also impact the mental status of the patient’s immediate family. This is known as PICS-Family (PICS-F) [10-12]. Treatment of PICS: Approximately 80% of PICS patients need primary care physiotherapy. Physiotherapists and GPs are often the only primary care professionals involved in the recovery process of these patients after hospital discharge [13, 14]. Both patients and healthcare professionals report a number of difficulties, e.g. limited transmural continuity in healthcare, coordination of multidisciplinary activities, supportive treatment guidelines and specific knowledge of pathology, treatment and prognosis. Patients report that they are not adequately supported when resuming their professional activities and that medical and allied healthcare treatments do not fully meet their needs at that time [15-18]. The REACH project: In order to improve the situation, the REACH project (REhabilitation After Critical illness and Hospital discharge) was started in Amsterdam region in the Netherlands. Within REACH, a Community of Practice – consisting of professionals (physiotherapists, occupational therapists, dieticians), those who live or have lived with the condition and researchers – has developed a transmural rehab programme. A special attribute of this programme is the integration of the concept of “positive health”. The case in this article describes the treatment of a PICS patient treated within the REACH network.
