109 Summary and general discussion A PRO is “any report of the status of a patient’s health condition that comes directly from the patient without interpretation of the patient’s response by a clinician or anyone else” 24.Within this thesis, we have used the ABC-scale to reflect subjective balance confidence, a highly relevant assessment, as 73% of people with HSP experience fear of falling. 25 The ABC-scale demonstrated that also our participants with HSP experienced greater fear of falling than healthy controls. More importantly, it showed the potential to discriminate between fallers from non-fallers among our participants with HSP, highlighting the possible strength of a PRO. Possibly, a patient’s reflection on his/her balance problems may be a better indicator of fall risk than clinician-based or so-called ‘objective’ assessments. The assessment of gait perception may, however, be improved by adding how a person experiences his/her walking other than self-confidence, for instance, psychological satisfaction with gait, gait-related pain or fatigue, and emotional and social aspects related to gait. Several generic questionnaires assess emotional health, social participation, and quality of life (e.g., the 36-item Short Form Healthy Survey or the EuroQol 5D, 26 but it is probably more valid and sensitive to use goal-oriented assessments tailored to gait-related performance and social participation. For example, we could collect qualitative feedback from participants27; use the Canadian Occupational Performance Measure (COPM), a self-assessment of performance and satisfaction with selfidentified activities28; or use a special scale to map the perceived impact of a specific problem, such as the impact of fatigue through the Fatigue Severity Scale. 29 Fall risk Over 50% of people with HSP experience falls that lead to injuries, a problem that has been well-documented. 25 This thesis provides novel insight into the assessment of fall risk. We found that the ABC-scale, followed by the Mini-BESTest, has the potential to discriminate between fallers and non-fallers better than biomechanical measures of gait stability. As a next step, we need to gain insight into measures that predict the ‘tipping point’ of increased fall risk in people with HSP. In other words, we should be able to individually predict when falls will likely occur more frequently than before, and when they will likely lead to injuries. Better insight into (the causes of) individually increased fall risk will allow for timely and targeted interventions, such as the prescription of ankle-foot orthoses, walking aids, or behavioral adjustments. Identifying the individual tipping point can only be investigated in a large-scale, longitudinal cohort study including people with HSP that have fallen and those who have not yet fallen. In such a study, a fall should be defined as an unexpected event in which the participant comes to rest on a lower level. For an overall analysis, it would be good to include all falls, including those due to excessive force (e.g., while playing sports). This latter type of fall may provide insight into the level of 7
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