title: Physiotherapy in degenerative cerebellar ataxias: utilisation, patient satisfaction, and professional expertise.
abstract: Physiotherapy plays an important role in the management of patients with degenerative cerebellar ataxias. However, our insight in the quantity and quality of physiotherapy prescription in this group of patients is incomplete. The purposes of this study were to investigate the utilization of physiotherapy and patient satisfaction in patients with degenerative ataxias in The Netherlands and to examine the level of expertise and needs of physiotherapists treating ataxia patients. Questionnaires were sent to members of the Dutch association for patients with degenerative cerebellar ataxias (n = 532). In addition, 181 questionnaires were sent to the physiotherapists who had recently treated the patients who responded. Eventually, 317 questionnaires from patients (60 %) and 114 questionnaires from physiotherapists (63 %) could be used for further analysis. Sixty-four percent of the patients were currently treated by a physiotherapist. Their median treatment duration was 5 years. Nineteen percent of the patients had never been referred, often despite the presence of limitations in daily activities. On the other hand, some participants without reported limitations had received physiotherapy. In general, participants were satisfied with their physiotherapist. The most reported treatment goals were improvement or maintenance of balance, general physical condition, and mobility. Physiotherapists reported lack of ataxia-specific expertise and expressed the need for education and evidence-based guidelines. Referral to and use of physiotherapy in patients with degenerative cerebellar ataxia in The Netherlands are currently inconsistent and not in agreement with the little scientific evidence available. Referral rates are high, but referrals and actual necessity are discrepant; treatment duration is long; and ataxia-specific expertise among physiotherapists is insufficient. Evidence-based recommendations and specific training of physiotherapists are needed.
authors.affiliation: Department of Neurology, Donders Institute for Brain, Cognition, and Behaviour, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Ella M R
authors.initials: EM
authors.lastname: Fonteyn
authors.forename: Samyra H J
authors.initials: SH
authors.lastname: Keus
authors.forename: Carla C P
authors.initials: CC
authors.lastname: Verstappen
authors.forename: Bart P C
authors.initials: BP
authors.lastname: van de Warrenburg
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002524:Cerebellar Ataxia / Q000150:complications; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D017060:Patient Satisfaction; D059825:Physical Therapists / Q000523:psychology*; D026741:Physical Therapy Modalities; D012017:Referral and Consultation; D013132:Spinocerebellar Degenerations / Q000209:etiology / Q000523:psychology / Q000534:rehabilitation; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult