108 Chapter 7 important limitations. Firstly, the Activ8 monitors are unable to provide information on the three gait requirements: stepping, dynamic balance, and gait adaptability. Secondly, some people with HSP perform regular physical activities but in an adapted form (e.g. lying when cycling on a recumbent bike or sitting when playing wheelchair basketball), which activities cannot be adequately measured with Activ8 monitors. Therefore, for future studies in HSP, it would be recommendable to use activity trackers that are validated for tracking physical activity in adapted sports. Furthermore, it would be recommendable to use wearables that can measure not only bouts (i.e., quantity) of walking, but also provide insight in how people walk (i.e., quality), with respect to all three requirements. Lately, considerable progress has been made in the assessment of gait in people with HSP using digital technologies, which can be implemented in the future to assess gait performance12,22. With one wearable sensor per foot, a validated method was developed to assess stride characteristics and changes in gait variability in a free-living environment. Remarkably, these measures correlated with fear of falling, quality of life, and progression of disease severity. 12 Similar results were found in detecting step characteristics with a single sensor on the lower back. 22 Furthermore, the latter method demonstrated sufficient accuracy of step characteristics detection when walking both with and without various types of walking aid. This insight is essential to compare longitudinal data when an individual with HSP uses a walking aid due to disease progression. 22 These studies provide novel opportunities to measure someone’s gait in the home environment and, just as importantly, during community ambulation (e.g., in public areas, such as a park or a theatre, and in private locations, such as a family member’s home). Of note, the outcome measures in both studies mainly reflect the gait requirement stepping. Therefore, the potential of wearables to assess dynamic balance and gait adaptability in people with HSP is still unknown and remains a future challenge. Future developments should provide insight into (possible discrepancies between) individual gait capacity vs. gait performance in people with HSP that could inform and potentially strengthen clinical practice and research. It should be possible to monitor which gait problems arise at home or in the community, when they occur, and whether they can be ameliorated through innovative interventions. Gait perception High-quality care requires that patients disclose the perceived effectiveness of a treatment, for example, by expressing their (dis-)satisfaction and providing feedback on the impact of the provided care. Recently, this viewpoint has been increasingly recognized in healthcare, which has led to the introduction of patientreported outcomes (PROs). 23 PROs are also important for research, as the patient’s viewpoint can help evaluate the efficacy and feasibility of interventions and provide information about the meaningfulness of outcome measures.
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