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: Adequate self-management skills are of great importance for patients with chronic obstructive pulmonary disease (COPD) to reduce the impact of COPD exacerbations. Using mobile health (mHealth) to support exacerbation-related self-management could be promising in engaging patients in their own health and changing health behaviors. However, there is limited knowledge on how to design mHealth interventions that are effective, meet the needs of end users, and are perceived as useful. By following an iterative user-centered design (UCD) process, an evidence-driven and usable mHealth intervention was developed to enhance exacerbation-related self-management in patients with COPD. Objective: This study aimed to describe in detail the full UCD and development process of an evidence-driven and usable mHealth intervention to enhance exacerbation-related self-management in patients with COPD. Methods: The UCD process consisted of four iterative phases: (1) background analysis and design conceptualization, (2) alpha usability testing, (3) iterative software development, and (4) field usability testing. Patients with COPD, health care providers, COPD experts, designers, software developers, and a behavioral scientist were involved throughout the design and development process. The intervention was developed using the behavior change wheel (BCW), a theoretically based approach for designing behavior change interventions, and logic modeling was used to map out the potential working mechanism of the intervention. Furthermore, the principles of design thinking were used for the creative design of the intervention. Qualitative and quantitative research methods were used throughout the design and development process. Results: The background analysis and design conceptualization phase resulted in final guiding principles for the intervention, a logic model to underpin the working mechanism of the intervention, and design requirements. Usability requirements were obtained from the usability testing phases. The iterative software development resulted in an evidence-driven and usable mHealth intervention—Copilot, a mobile app consisting of a symptom-monitoring module, and a personalized COPD action plan. Conclusions: By following a UCD process, an mHealth intervention was developed that meets the needs and preferences of patients with COPD, is likely to be used by patients with COPD, and has a high potential to be effective in reducing exacerbation impact. This extensive report of the intervention development process contributes to more transparency in the development of complex interventions in health care and can be used by researchers and designers as guidance for the development of future mHealth interventions.
Background: There is an emergence of mobile health (mHealth) interventions to support self-management in patients with chronic obstructive pulmonary disease (COPD). Recently, an evidence-driven mHealth intervention has been developed to support patients with COPD in exacerbation-related self-management: the Copilot app. Health care providers (HCPs) are important stakeholders as they are the ones who have to provide the app to patients, personalize the app, and review the app. It is, therefore, important to investigate at an early stage whether the app is feasible in the daily practice of the HCPs. Objective: The aim of this study is to evaluate the perceived feasibility of the Copilot app in the daily practice of HCPs. Methods: A multimethods design was used to investigate how HCPs experience working with the app and how they perceive the feasibility of the app in their daily practice. The feasibility areas described by Bowen et al were used for guidance. HCPs were observed while performing tasks in the app and asked to think aloud. The System Usability Scale was used to investigate the usability of the app, and semistructured interviews were conducted to explore the feasibility of the app. The study was conducted in primary, secondary, and tertiary care settings in the Netherlands from February 2019 to September 2019. Results: In total, 14 HCPs participated in this study—8 nurses, 5 physicians, and 1 physician assistant. The HCPs found the app acceptable to use. The expected key benefits of the app were an increased insight into patient symptoms, more structured patient conversations, and more tailored self-management support. The app especially fits within the available time and workflow of nurses. The use of the app will be influenced by the autonomy of the professional, the focus of the organization on eHealth, costs associated with the app, and compatibility with the current systems used. Most HCPs expressed that there are conditions that must be met to be able to use the app. The app can be integrated into the existing care paths of primary, secondary, and tertiary health care settings. Individual organizational factors must be taken into account when integrating the app into daily practice. Conclusions: This early-stage feasibility study shows that the Copilot app is feasible to use in the daily practice of HCPs and can be integrated into primary, secondary, and tertiary health care settings in the Netherlands. The app was considered to best fit the role of the nurses. The app will be less feasible for those organizations in which many conditions need to be met to use the app. This study provides a new approach to evaluate the perceived feasibility of mHealth interventions at an early stage and provides valuable insights for further feasibility testing.
