Paraneoplastic neurological syndromes: the patients' view. An international survey on behalf of the IPNSA

Paraneoplastic neurological syndromes (PNS) are rare disorders with in most cases severe neurological deficits. For the patients themselves, these physical impairments impose many medical and psychosocial issues which have not been studied so far. Upon suggestion of a patient organisation we looked into the patients' view on the impact of their paraneoplastic disorder using a semistructured questionnaire. 50 patients took part in this study (77.1% female; median 57.8y). 81.3% had a diagnosis of PCD, 8.3% of limbic encephalitis. Associated abs were mostly anti-Yo (35.6%) and anti-Hu (15.6%). Associated tumors wer…