Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients' needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.Results: Four themes were identified which can be reflected by the phrases: (1) 'I stumble', (2) 'I struggle', (3) 'I feel ashamed', and (4) 'I need support'. Balance and gait problems led to limitations in domestic activities, employment, and recreation. 'Stumbling' also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.Implications for rehabilitationAccording to patients with hereditary spastic paraplegia, interventions for spasticity should not only be aimed at reducing motor impairments, but also on reducing pain and fatigue, improving nighttime rest and general well-being, and optimizing the performance of relevant personal activities.Medical, role and emotional management in patients with hereditary spastic paraplegia can be improved only when individual needs are identified and monitored over the course of the disease.Besides assessment of bodily functions and physical capacities, systematic evaluation of patient-reported outcomes will help both patients and professionals to monitor the functional impact of disease progression and to evaluate the effects of interventions aimed at retarding this progression.
Keywords: Hereditary spastic paraplegia; patient generated health data; patient reported outcomes; qualitative research; spasticity.