“Freed by a wheelchair” — How patients use and experience their power wheelchairs

Background: As their mobility deteriorates, people with ALS (PALS) increasingly rely on mobility aids and devices to maintain their independence. As their needs increase, power wheelchairs are increasingly becoming platforms for other assistive technology such as communication devices, ventilators, or environmental control mechanisms. Innovations such as GPS, integration of cellular services, and Bluetooth offer possible enhancements but also raise privacy concerns. Objective: To describe the experience of PALS on PatientsLikeMe using power wheelchairs, the benefits and challenges experienced, ways they use their wheelchairs to promote their health, and their desires for future upgrades. Methods: Analysis of existing quantitative ALSFRS-R and symptom data from PatientsLikeMe profiles, as well as qualitative analysis of open-text discussions in social forums, and a prospective survey (N=100) of experiences with power wheelchairs across patients with ALS, MS, and spinal cord injury. Results: Treatment evaluations show that >80% of patients reported moderate or major efficacy of power wheelchairs to address their fatigue, lack of mobility, and balance problems, noting that wheelchairs help them to regain independence and minimize the risk of injury. Patients still face challenges, however, such as repairs when devices break down, or trying to engineer their own solutions for making chairs compatible with other devices, underlining the potential importance of modular mounting and power systems. Patients appear enthusiastic about the potential for newer forms of "connected wheelchairs" but want transparency and control over how their data is shared. Engaging online with patients in product R&D may be an efficient way of developing better products and services to meet patient needs. Discussion: Our findings may support future development directions for wheelchair manufacturers and underline that in the modern era, power wheelchairs support patients living their best lives, not just getting from A to B.