Abstract

BackgroundPhantom 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.ObjectiveThe 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?MethodsThe telerehabilitation platform was developed using an iterative user-centered design process. In the first phase, a questionnaire followed by a semistructured interview was used to identify the user requirements of both the patients and their physical and occupational therapists, which were then prioritized using a decision matrix. The second phase involved designing the interface of the telerehabilitation platform using design sketches, wireframes, and interface mock-ups to develop a low-fidelity prototype. Heuristic evaluation resulted in a medium-fidelity prototype whose usability was tested in routine care in the final phase, leading to the development of a high-fidelity prototype.ResultsA total of 7 categories of patient requirements were identified: monitoring, exercise programs, communication, settings, background information, log-in, and general requirements. One additional category emerged for therapists: patient management. Based on these requirements, patient and therapist interfaces for the telerehabilitation platform were developed and redesigned by the software development team in an iterative process, addressing the usability problems that were reported by the users during 4 weeks of field testing in routine care.ConclusionsOur findings underline the importance of involving the users and other stakeholders early and continuously in an iterative design process, as well as the need for clear criteria to identify critical user requirements. A decision matrix is presented that incorporates the views of various stakeholders in systematically rating and prioritizing user requirements. The findings and lessons learned might help health care providers, researchers, software designers, and other stakeholders in designing and evaluating new teletreatments, and hopefully increase the likelihood of user acceptance.

Highlights

  • Phantom limb pain is a frequent and persistent problem following amputation

  • Our findings underline the importance of involving the users and other stakeholders early and continuously in an iterative design process, as well as the need for clear criteria to identify critical user requirements

  • 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?

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Summary

Introduction

Phantom limb pain is a frequent and persistent problem following amputation. Despite many pharmacological and nonpharmacological interventions, up to 80% of patients still suffer from phantom limb pain many years after the amputation [1-3]. According to a recent trial [3], 63% of a sample of 3234 amputees with an average time since amputation of 33 years, were still suffering from phantom limb pain. These data illustrate the chronic nature of this disorder, which is accompanied and maintained by a wide range of changes in the peripheral [4] and central nervous system [5]. Patients’ adherence to unsupervised training is generally poor [11], implying the need for effective strategies to support long-term self-management by patients with phantom limb pain. 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

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