Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands.
Hans C J W KerstensBas J H Van LithMaarten J NijkrakeBert J M De SwartLaura A C Van den BemdRob J E M SmeetsFheodoroff KlemensBart P C Van de WarrenburgPhilip J Van der WeesAlexander C H GeurtsPublished in: Orphanet journal of rare diseases (2021)
Based on this web-based survey in the Netherlands, there seems to be ample room for improvement to meet and attune the healthcare needs and expectations of people with HSP concerning both their motor and non-motor symptoms and functional limitations. In addition, the provision of adequate information about non-pharmacological and pharmacological interventions seems to be insufficient for many patients to allow shared decision making. These conclusions warrant a more pro-active attitude of healthcare providers as well as an interdisciplinary approach for a substantial proportion of the HSP population, also involving professionals with a primary occupational and/or psychosocial orientation.