Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands

Abstract Background We aimed to identify healthcare needs, expectations, utilization, and the experienced treatment effects in a population of Dutch patients with hereditary spastic paraplegia (HSP). Methods We distributed an online questionnaire among 194 adult persons with HSP in the Netherlands, of which 166 returned a fully completed version. After applying predefined exclusion criteria, 109 questionnaires from persons with pure HSP were analysed. Results Healthcare needs and expectations were primarily focused on the relief of muscle stiffness and reduction of balance and gait impairments... Mehr ...

Verfasser: Hans C. J. W. Kerstens
Bas J. H. Van Lith
Maarten J. Nijkrake
Bert J. M. De Swart
Laura A. C. Van den Bemd
Rob J. E. M. Smeets
Fheodoroff Klemens
Bart P. C. Van de Warrenburg
Philip J. Van der Wees
Alexander C. H. Geurts
Dokumenttyp: Artikel
Erscheinungsdatum: 2021
Reihe/Periodikum: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-10 (2021)
Verlag/Hrsg.: BMC
Schlagwörter: Hereditary spastic paraplegia / Spasticity / Survey / Patient-reported outcomes / Needs assessment / Healthcare utilization / Medicine / R
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27188450
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://doi.org/10.1186/s13023-021-01915-0