Trouble with ataxia: A longitudinal qualitative study of the diagnosis and management of a group of rare, progressive neurological conditions

G Daker-White, J Ealing, J Greenfield, H Kingston, C Sanders, K. Payne

    Research output: Contribution to journalArticlepeer-review

    Abstract

    Objectives: 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.
    Original languageEnglish
    Number of pages9
    JournalSAGE Open Medicine
    Volume1
    DOIs
    Publication statusPublished - 1 Oct 2013

    Keywords

    • Diagnosis, neurology, qualitative study, patient experience, professional views

    Fingerprint

    Dive into the research topics of 'Trouble with ataxia: A longitudinal qualitative study of the diagnosis and management of a group of rare, progressive neurological conditions'. Together they form a unique fingerprint.

    Cite this