Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment: Italian multicentre survey of 905 patients with long-term follow-up

• Published in: Parkinsonism & related disorders Vol. 38; pp. 90 - 92
• Main Authors: Sensi, Mariachiara, MD, PhD, Cossu, Giovanni, MD, Mancini, Francesca, MD, Pilleri, Manuela, MD, Zibetti, Maurizio, MD, Modugno, Nicola, MD, PhD, Quatrale, Rocco, MD, Tamma, Filippo, MD, Antonini, Angelo, MD, PhD, Aguggia, Marco, MD, Amboni, Marianna, MD, PhD, Arca, Roberta, MD, Bartolomei, Luigi, MD, Bonetto, Nicola, MD, Calandra-Buonaura, Giovanna, MD, PhD, Bove, Francesco, MD, Calandrella, Daniela, MD, Canesi, Margherita, MD, PhD, Cannas, Antonino, MD, Capecci, Marianna, MD, Caputo, Elena, MD, Ceravolo, Maria Gabriella, MD, Phd, Ceravolo, Roberto, MD, Cerrone, Gloria, BScN, Coletti Moja, Mario, MD, Comi, Cristoforo, MD, Cortelli, Pietro, MD, PhD, D'Antonio, Paola, MD, Dematteis, Francesca, MD, Di Lazzaro, Vincenzo, MD, PhD, Eleopra, Roberto, MD, Fabbrini, Giovanni, MD, Fichera, Mario, MD, Grassi, Enrico, MD, Guido, Marco, MD, Gusmaroli, Graziano, MD, Latorre, Anna, MD, Malaguti, Maria Chiara, MD, Marano, Massimo, MD, Marano, Pietro, MD, Marconi, Roberto, MD, Mazzucchi, Sonia, MD, Meco, Giuseppe, MD, PhD, Minafra, Brigida, MD, Morgante, Francesca, MD, PhD, Pacchetti, Claudio, MD, PhD, Pierantozzi, Mariangela, MD, PhD, Pontieri, Francesco E., MD, PhD, Riboldazzi, Giulio, MD, Ricchi, Valeria, MD, Ricchieri, Gianluigi, MD, Rinaldo, Sara, NT, Rispoli, Vittorio, MD, Rossi, Simone, MD, PhD, Rubino, Alfonso, MD, Russo, Antonio, MD, PhD, Saddi, Maria Valeria, MD, Stefani, Alessandro, MD, PhD, Simoni, Simone, MD, Solla, Paolo, MD, Tambasco, Nicola, MD, Tamburin, Stefano, MD, Tessitore, Alessandro, MD, PhD, Torre, Elena, MD, Ulivelli, Monica, MD, Vita, Maria Gabriella, MD, Volonté, Maria Antonietta, MD
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.05.2017
• Subjects: Antiparkinson Agents - administration & dosage; Carbidopa - administration & dosage; Disease Progression; Drug Combinations; Female; Gels - therapeutic use; Health Surveys; Humans; Intestines - physiology; Italy; Levodopa - administration & dosage; Levodopa-carbidopa intestinal gel infusion; Longitudinal Studies; Male; Neurology; Neuropathy; Parkinson Disease - drug therapy; Parkinson's disease; Retrospective Studies; Substance Withdrawal Syndrome - etiology; Withdrawal; Parkinson's disease; Neuropathy; Levodopa-carbidopa intestinal gel infusion; Withdrawal
• ISSN: 1353-8020; 1873-5126
• DOI: 10.1016/j.parkreldis.2017.02.020

Abstract Objectives 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.