Access to specialist ataxia centres in Europe: cross-sectional surveys in the United Kingdom, Italy, and Germany.

BACKGROUND

Progressive ataxias are a diverse and rare group of neurodegenerative conditions characterised by unsteadiness, incoordination and slurred speech. Additional neurological features and pathology outside the central nervous system may also be present.1 Optimal management of these complex conditions requires access to specialist diagnostics and treatment via Specialist Ataxia Centres (SACs). Greater understanding of factors impacting on SAC access may help to maximise utilisation.2.

AIM: This study explored factors associated with referral to SACs or discontinued access.

METHODS

Responses to cross-sectional surveys conducted separately in three European countries were collated. The national surveys were conducted at different times and the question format evolved, requiring responses to be harmonised. The 550 individual responses were examined for associations between SAC access and respondent characteristics.

RESULTS

Respondents with a genetic diagnosis were observed to have greater representation in SACs in Italy and Germany than in the UK, with this contrast being most prominent with a diagnosis of Friedreich's ataxia. Respondents with Idiopathic Cerebellar Ataxia also had significantly lower proportion of referrals in the UK relative to Germany and Italy. Fewer reported comorbidities, being in employment, and shorter travel time to SACs were associated with reported SAC attendance or referral. Increasing mobility impairment was associated with reported discontinuation of SAC attendance. No statistically significant associations were observed between SAC attendance and referral source, time since diagnosis, or reported impact of ataxia on daily living.

CONCLUSIONS

Statistically significant differences between SAC and non-SAC respondent cohorts were observed, as well as variations in SAC access between countries. These findings highlight factors that may be relevant to SAC utilisation. The results suggest potential areas for further investigation, including strategies to support access, such as telehealth, and may inform the design of future multinational studies.