title: Trouble with ataxia: A longitudinal qualitative study of the diagnosis and medical management of a group of rare, progressive neurological conditions.
abstract: OBJECTIVE
  An exploratory investigation of diagnosis and management in progressive ataxias: rare neurological conditions usually affecting balance, mobility and speech.
  
  
  METHODS
  A longitudinal qualitative study into the experiences of people with ataxia and neurologists. Thematic analysis and follow-up interviews were used to determine diagnosis and management issues over time.
  
  
  RESULTS
  People with ataxia recruited via two hospital departments and Ataxia UK were interviewed at baseline (n = 38) and 12-month follow-up (n = 31). Eight consultant neurologists were interviewed once. Patient accounts were diverse, but many expressed frustration at having an incurable condition and dissatisfaction with service outcomes. At follow-up, there was variation in their contact and satisfaction with helping agencies. Service issues regarding continuity of care and the primary/secondary care interface were evident. Neurologists' accounts also varied. One-half reported that there is nothing that can be done, and one-half favoured specialist referral to increase the likelihood of finding an underlying aetiology within budget constraints.
  
  
  CONCLUSIONS
  Diagnostic uncertainties existing at baseline remained for patients at follow-up interviews, although some had learned to deal with the uncertainties brought by the diagnosis of a largely untreatable condition. Care pathways only seemed to operate in the case of defined conditions, such as Friedreich's Ataxia, the most commonly inherited cause. The findings point to a need to develop the evidence base to inform the relative utility of diagnostic procedures in the context of finite resources for patient care and support.
authors.affiliation: Centre for Primary Care, The University of Manchester, Manchester, UK.
authors.forename: Gavin
authors.initials: G
authors.lastname: Daker-White
authors.affiliation: Salford Royal NHS Foundation Trust, Salford, UK.
authors.forename: John
authors.initials: J
authors.lastname: Ealing
authors.affiliation: Ataxia UK, London, UK.
authors.forename: Julie
authors.initials: J
authors.lastname: Greenfield
authors.affiliation: Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Kingston
authors.affiliation: Centre for Primary Care, The University of Manchester, Manchester, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Sanders
authors.affiliation: Centre for Health Economics, The University of Manchester, Manchester, UK.
authors.forename: Katherine
authors.initials: K
authors.lastname: Payne
keywords: Diagnosis; neurology; patient experience; professional views; qualitative study