Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands ...

Abstract Background Hereditary 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. Methods We developed and distributed an HSP-specific online q... Mehr ...

Verfasser: Lith, Bas
Kerstens, Hans
Bemd, Laura
Sanden, Maria
Weerdesteyn, Vivian
Smeets, Rob
Fheodoroff, Klemens
Warrenburg, Bart
Geurts, Alexander
Dokumenttyp: Datenquelle
Erscheinungsdatum: 2020
Verlag/Hrsg.: figshare
Schlagwörter: Medicine / Neuroscience / Biotechnology / Sociology / FOS: Sociology / Immunology / FOS: Clinical medicine / Cancer
Sprache: unknown
Permalink: https://search.fid-benelux.de/Record/base-29167396
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://dx.doi.org/10.6084/m9.figshare.c.4882158

Abstract Background Hereditary 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. Methods We 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. Results Participants 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 ...