Patient pathways for rare diseases in Europe: ataxia as an example

Table 2 Reasons why people stop going to a SAC to receive care for their ataxia

Reasons	UK N (%)	Germany	Italy
Problems with travelling / transport to SAC	12 (25.5%)	5 (16.7%)	12 (26.6%)
Did not find it useful	6 (12.8%)	1 (3.3%)	8 (17.8%)
Not referred again	7 (14.9%)	1 (3.3%)	-
Equal care locally	2 (4.3%)	4 (13.3%)	8 (17.8%)
Unable to take the time off work to visit the centre	0 (0%)	0 (0%)	0 (0%)
Other [please specify in the text box]	5 (10.6%)	10 (33.4%)	9 (20%)
Unsure	2 (4.3%)	9 (30%)	8 (17.8%)
Do not wish to answer	1 (2.1%)	–	–
Closure of a centre	12 (25.5%)	–	–
Total N respondents	47 (100%)	30 (100%)	45 (100%)

Below are the comments of participants for each country who answer ‘other’: Other reasons in the UK: ataxia is mild, waiting for referral, waiting for an appointment, feel others would benefit more than me i.e. younger people
Other reasons in Germany: cancellation due to Covid, diagnosis not verified so only taking part in research, only required to see them every two years, was asked to see a general neurologist, ongoing care, attended an appointment at SAC as part of a research study
Other reasons in Italy: I am disappointed with the answers from the specialists, Latina is far from Rome, C/O Besta Institute/Milan they told me that at Ferrara hospital they can take care of me, At Besta they couldn't do nothing more, far from the centre - transport problems, I attend a non-ataxia specialist daily association but I am well followed up and they well understand my condition, I am still occasionally followed up, During the first years they seem to help then nothing, I hope they could do more they simply gave me a diagnosis suggesting me to refer to a neurologist I trust, I lost my contacts and not yet found an ataxia specialist who can follow me up in Puglia or near, stopped due to Covid

ISSN: 1750-1172