title: Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment: Italian multicentre survey of 905 patients with long-term follow-up.
abstract: OBJECTIVE
  To report the results of a national survey aimed at quantifying the current level of diffusion of Levodopa/carbidopa intestinal gel (LCIG) in Italy.
  
  
  METHODS
  Sixty Parkinson's Disease (PD) specialists in Italy were invited to complete a survey covering issues on clinical and practical aspects of LCIG therapy.
  
  
  RESULTS
  Clinical features of 905 patients were collected retrospectively. The majority of centres reported the use of a multidisciplinary team, biochemistry testing, neurophysiological and neuropsychological tests before and after treatment, in addition to caregivers' training and patient's follow as outpatients. Most centres (60%) used internal guidelines for patient selection. The overall rate of adverse events was 55.1%. Weight loss, chronic polyneuropathy and stoma infection were the most frequently reported. 40% of centres used replacement therapy with Vitamin B12 and Folic acid from the start of LCIG and continued this for the duration of treatment. The rate of discontinuation was of 25.7% overall, with 9.5% of cases occurring in the first year. The main causes of withdrawal were device-related complications, disease progression (comorbidity, severe dementia) and caregiver and/or patient dissatisfaction.
  
  
  CONCLUSIONS
  In Italy LCIG infusion is managed in a uniform manner at a clinical, practical and organizational level even though the selection criteria are not standardized through the country. The high percentage of patients remaining on treatment in the short- and long-term follow-up confirms effectiveness of treatment, careful follow-up, and appropriate patient and caregivers training.
authors.affiliation: Department of Neurology, Azienda Ospedaliera Universitaria Arcispedale S.Anna, Ferrara, Italy.
authors.forename: Mariachiara
authors.initials: M
authors.lastname: Sensi
authors.affiliation: Department of Neurology, Ospedale Brotzu, Cagliari, Italy. Electronic address: giovannicossu@aob.it.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Cossu
authors.affiliation: Department of Neurology, Humanitas San Pio X-Milano, Milan, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Mancini
authors.affiliation: Department of Neurology, (Neurology Service), Villa Margherita Private Hospital, Arcugnano, Vicenza, Italy.
authors.forename: Manuela
authors.initials: M
authors.lastname: Pilleri
authors.affiliation: Department of Neuroscience, A.O. Città della Salute e della Scienza di Torino, Turin, Italy.
authors.forename: Maurizio
authors.initials: M
authors.lastname: Zibetti
authors.affiliation: Department of Neurology, Neuromed IRCSS Pozzilli, Pozzilli, Italy.
authors.forename: Nicola
authors.initials: N
authors.lastname: Modugno
authors.affiliation: Department of Neurology, Ospedale dell'Angelo, Mestre, Italy.
authors.forename: Rocco
authors.initials: R
authors.lastname: Quatrale
authors.affiliation: Department of Neurology, Ospedale F.Miulli, Acquaviva delle Fonti (BA), Italy.
authors.forename: Filippo
authors.initials: F
authors.lastname: Tamma
authors.affiliation: Parkinson and Movement Disorders Unit, IRCCS Hospital San Camillo, Venice, Italy.
authors.forename: Angelo
authors.initials: A
authors.lastname: Antonini
mesh_terms: D000978:Antiparkinson Agents / Q000008:administration & dosage*; D002230:Carbidopa / Q000008:administration & dosage*; D018450:Disease Progression; D004338:Drug Combinations; D005260:Female; D005782:Gels / Q000627:therapeutic use*; D006306:Health Surveys; D006801:Humans; D007422:Intestines / Q000502:physiology*; D007558:Italy; D007980:Levodopa / Q000008:administration & dosage*; D008137:Longitudinal Studies; D008297:Male; D010300:Parkinson Disease / Q000188:drug therapy*; D012189:Retrospective Studies; D013375:Substance Withdrawal Syndrome / Q000209:etiology
chemical_list: D000978:Antiparkinson Agents; D004338:Drug Combinations; D005782:Gels; C009265:carbidopa, levodopa drug combination; D007980:Levodopa; D002230:Carbidopa
keywords: Levodopa-carbidopa intestinal gel infusion; Neuropathy; Parkinson's disease; Withdrawal