ArticleOrphanet journal of rare diseases2020
Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 20 citations in OpenAlex.
- Gait-Adaptability Training in People With Hereditary Spastic Paraplegia: A Randomized Clinical Trial.Neurorehabilitation and neural repair · 2023Trial
- "Effects of robot-assisted gait training combined with traditional treatment in hereditary spastic paraplegia: An observational pilot cohort study".Scientific reports · 2026Observational
- Cognitive impairment in hereditary spastic paraparesis: An overlooked aspect of a motor disorder.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Article
- Designing and Validating a Hereditary Spastic Paraplegia-Specific Quality of Life Rating Scale (HSPQoL).Cerebellum (London, England) · 2024Article
- Surgical treatment options for spasticity in children and adolescents with hereditary spastic paraplegia.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2024Article
- Functional popliteal angle tests improve identification of short hamstring muscle-tendon length in patients with a central neurological lesion.Scientific reports · 2023Article
- Online monitoring of focal spasticity treatment with botulinum toxin in people with chronic stroke or hereditary spastic paraplegia: a feasibility study.Journal of rehabilitation medicine · 2023Article
- Mobile digital gait analysis objectively measures progression in hereditary spastic paraplegia.Annals of clinical and translational neurology · 2023Article
- Stakeholders' views on drug development: the congenital disorders of glycosylation community perspective.Orphanet journal of rare diseases · 2022Article
- Gait Recognition for Lower Limb Exoskeletons Based on Interactive Information Fusion.Applied bionics and biomechanics · 2022Review
- Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands.Orphanet journal of rare diseases · 2021Article
- Article
- COVID-19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia.Journal of neurology · 2020Article
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Authors and funding
9 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHereditary spastic paraplegia (HSP) is a group of inherited disorders characterized by progressive spastic paresis of the lower limbs. Treatment is often focused on reducing spasticity and its physical consequences. To better address individual patients' needs, we investigated a broad range of experienced complaints, activity limitations, and loss of motor capacities in pure HSP. In addition, we aimed to identify patient characteristics that are associated with increased fall risk and/or reduced walking capacity.
methodsWe developed and distributed an HSP-specific online questionnaire in the Netherlands. A total of 109 out of 166 questionnaires returned by participants with pure HSP were analyzed.
resultsParticipants experienced the greatest burden from muscle stiffness and limited standing and walking activities, while 72% reported leg and/or back pain. Thirty-five and 46% reported to use walking aids (e.g. crutches) indoors and outdoors, respectively; 57% reported a fall incidence of at least twice a year ('fallers'); in 51% a fall had led to an injury at least once; and 73% reported fear of falling. Duration of spasticity and incapacity to rise from the floor were positively associated with being a 'faller', whereas non-neurological comorbidity and wheelchair use were negatively associated. Higher age, experienced gait problems, not being able to stand for 10 min, and incapacity to open a heavy door showed a negative association with being a 'walker without aids' (> 500 m).
conclusionsOur results emphasize the large impact of spastic paraparesis on the lives of people with pure HSP and contribute to a better understanding of possible targets for rehabilitation.
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