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

Mariachiara Sensi, Giovanni Cossu, Francesca Mancini, Manuela Pilleri, Maurizio Zibetti, Nicola Modugno, Rocco Quatrale, Filippo Tamma, Angelo Antonini, Marco Aguggia, Marianna Amboni, Roberta Arca, Luigi Bartolomei, Nicola Bonetto, Giovanna Calandra-Buonaura, Francesco Bove, Daniela Calandrella, Margherita Canesi, Antonino Cannas, Marianna CapecciElena Caputo, Maria Gabriella Ceravolo, Roberto Ceravolo, Gloria Cerrone, Mario Coletti Moja, Cristoforo Comi, Pietro Cortelli, Paola D'Antonio, Francesca Dematteis, Vincenzo Di Lazzaro, Roberto Eleopra, Giovanni Fabbrini, Mario Fichera, Enrico Grassi, Marco Guido, Graziano Gusmaroli, Anna Latorre, Maria Chiara Malaguti, Massimo Marano, Pietro Marano, Roberto Marconi, Sonia Mazzucchi, Giuseppe Meco, Brigida Minafra, Francesca Morgante, Claudio Pacchetti, Mariangela Pierantozzi, Francesco E. Pontieri, Giulio Riboldazzi, Valeria Ricchi, on behalf of the, ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)90-92
Number of pages3
JournalParkinsonism and Related Disorders
Volume38
DOIs
Publication statusPublished - May 1 2017

Fingerprint

Gels
Italy
Caregivers
Patient Selection
Therapeutics
Polyneuropathies
Neuropsychological Tests
Vitamin B 12
Folic Acid
Biochemistry
Parkinson Disease
Dementia
Disease Progression
Comorbidity
Weight Loss
Outpatients
Surveys and Questionnaires
levodopa drug combination carbidopa
Guidelines
Equipment and Supplies

Keywords

  • Levodopa-carbidopa intestinal gel infusion
  • Neuropathy
  • Parkinson's disease
  • Withdrawal

ASJC Scopus subject areas

  • Neurology
  • Geriatrics and Gerontology
  • Clinical Neurology

Cite this

Sensi, M., Cossu, G., Mancini, F., Pilleri, M., Zibetti, M., Modugno, N., ... ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP (2017). Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment: Italian multicentre survey of 905 patients with long-term follow-up. Parkinsonism and Related Disorders, 38, 90-92. https://doi.org/10.1016/j.parkreldis.2017.02.020

Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment : Italian multicentre survey of 905 patients with long-term follow-up. / Sensi, Mariachiara; Cossu, Giovanni; Mancini, Francesca; Pilleri, Manuela; Zibetti, Maurizio; Modugno, Nicola; Quatrale, Rocco; Tamma, Filippo; Antonini, Angelo; Aguggia, Marco; Amboni, Marianna; Arca, Roberta; Bartolomei, Luigi; Bonetto, Nicola; Calandra-Buonaura, Giovanna; Bove, Francesco; Calandrella, Daniela; Canesi, Margherita; Cannas, Antonino; Capecci, Marianna; Caputo, Elena; Ceravolo, Maria Gabriella; Ceravolo, Roberto; Cerrone, Gloria; Coletti Moja, Mario; Comi, Cristoforo; Cortelli, Pietro; D'Antonio, Paola; Dematteis, Francesca; Di Lazzaro, Vincenzo; Eleopra, Roberto; Fabbrini, Giovanni; Fichera, Mario; Grassi, Enrico; Guido, Marco; Gusmaroli, Graziano; Latorre, Anna; Malaguti, Maria Chiara; Marano, Massimo; Marano, Pietro; Marconi, Roberto; Mazzucchi, Sonia; Meco, Giuseppe; Minafra, Brigida; Morgante, Francesca; Pacchetti, Claudio; Pierantozzi, Mariangela; Pontieri, Francesco E.; Riboldazzi, Giulio; Ricchi, Valeria; on behalf of the; ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP.

In: Parkinsonism and Related Disorders, Vol. 38, 01.05.2017, p. 90-92.

Research output: Contribution to journalArticle

Sensi, M, Cossu, G, Mancini, F, Pilleri, M, Zibetti, M, Modugno, N, Quatrale, R, Tamma, F, Antonini, A, Aguggia, M, Amboni, M, Arca, R, Bartolomei, L, Bonetto, N, Calandra-Buonaura, G, Bove, F, Calandrella, D, Canesi, M, Cannas, A, Capecci, M, Caputo, E, Ceravolo, MG, Ceravolo, R, Cerrone, G, Coletti Moja, M, Comi, C, Cortelli, P, D'Antonio, P, Dematteis, F, Di Lazzaro, V, Eleopra, R, Fabbrini, G, Fichera, M, Grassi, E, Guido, M, Gusmaroli, G, Latorre, A, Malaguti, MC, Marano, M, Marano, P, Marconi, R, Mazzucchi, S, Meco, G, Minafra, B, Morgante, F, Pacchetti, C, Pierantozzi, M, Pontieri, FE, Riboldazzi, G, Ricchi, V, on behalf of the & ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP 2017, 'Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment: Italian multicentre survey of 905 patients with long-term follow-up', Parkinsonism and Related Disorders, vol. 38, pp. 90-92. https://doi.org/10.1016/j.parkreldis.2017.02.020
Sensi, Mariachiara ; Cossu, Giovanni ; Mancini, Francesca ; Pilleri, Manuela ; Zibetti, Maurizio ; Modugno, Nicola ; Quatrale, Rocco ; Tamma, Filippo ; Antonini, Angelo ; Aguggia, Marco ; Amboni, Marianna ; Arca, Roberta ; Bartolomei, Luigi ; Bonetto, Nicola ; Calandra-Buonaura, Giovanna ; Bove, Francesco ; Calandrella, Daniela ; Canesi, Margherita ; Cannas, Antonino ; Capecci, Marianna ; Caputo, Elena ; Ceravolo, Maria Gabriella ; Ceravolo, Roberto ; Cerrone, Gloria ; Coletti Moja, Mario ; Comi, Cristoforo ; Cortelli, Pietro ; D'Antonio, Paola ; Dematteis, Francesca ; Di Lazzaro, Vincenzo ; Eleopra, Roberto ; Fabbrini, Giovanni ; Fichera, Mario ; Grassi, Enrico ; Guido, Marco ; Gusmaroli, Graziano ; Latorre, Anna ; Malaguti, Maria Chiara ; Marano, Massimo ; Marano, Pietro ; Marconi, Roberto ; Mazzucchi, Sonia ; Meco, Giuseppe ; Minafra, Brigida ; Morgante, Francesca ; Pacchetti, Claudio ; Pierantozzi, Mariangela ; Pontieri, Francesco E. ; Riboldazzi, Giulio ; Ricchi, Valeria ; on behalf of the ; ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP. / Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment : Italian multicentre survey of 905 patients with long-term follow-up. In: Parkinsonism and Related Disorders. 2017 ; Vol. 38. pp. 90-92.
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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.",
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author = "Mariachiara Sensi and Giovanni Cossu and Francesca Mancini and Manuela Pilleri and Maurizio Zibetti and Nicola Modugno and Rocco Quatrale and Filippo Tamma and Angelo Antonini and Marco Aguggia and Marianna Amboni and Roberta Arca and Luigi Bartolomei and Nicola Bonetto and Giovanna Calandra-Buonaura and Francesco Bove and Daniela Calandrella and Margherita Canesi and Antonino Cannas and Marianna Capecci and Elena Caputo and Ceravolo, {Maria Gabriella} and Roberto Ceravolo and Gloria Cerrone and {Coletti Moja}, Mario and Cristoforo Comi and Pietro Cortelli and Paola D'Antonio and Francesca Dematteis and {Di Lazzaro}, Vincenzo and Roberto Eleopra and Giovanni Fabbrini and Mario Fichera and Enrico Grassi and Marco Guido and Graziano Gusmaroli and Anna Latorre and Malaguti, {Maria Chiara} and Massimo Marano and Pietro Marano and Roberto Marconi and Sonia Mazzucchi and Giuseppe Meco and Brigida Minafra and Francesca Morgante and Claudio Pacchetti and Mariangela Pierantozzi and Pontieri, {Francesco E.} and Giulio Riboldazzi and Valeria Ricchi and {on behalf of the} and {ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP}",
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T1 - Which patients discontinue? Issues on Levodopa/carbidopa intestinal gel treatment

T2 - Italian multicentre survey of 905 patients with long-term follow-up

AU - Sensi, Mariachiara

AU - Cossu, Giovanni

AU - Mancini, Francesca

AU - Pilleri, Manuela

AU - Zibetti, Maurizio

AU - Modugno, Nicola

AU - Quatrale, Rocco

AU - Tamma, Filippo

AU - Antonini, Angelo

AU - Aguggia, Marco

AU - Amboni, Marianna

AU - Arca, Roberta

AU - Bartolomei, Luigi

AU - Bonetto, Nicola

AU - Calandra-Buonaura, Giovanna

AU - Bove, Francesco

AU - Calandrella, Daniela

AU - Canesi, Margherita

AU - Cannas, Antonino

AU - Capecci, Marianna

AU - Caputo, Elena

AU - Ceravolo, Maria Gabriella

AU - Ceravolo, Roberto

AU - Cerrone, Gloria

AU - Coletti Moja, Mario

AU - Comi, Cristoforo

AU - Cortelli, Pietro

AU - D'Antonio, Paola

AU - Dematteis, Francesca

AU - Di Lazzaro, Vincenzo

AU - Eleopra, Roberto

AU - Fabbrini, Giovanni

AU - Fichera, Mario

AU - Grassi, Enrico

AU - Guido, Marco

AU - Gusmaroli, Graziano

AU - Latorre, Anna

AU - Malaguti, Maria Chiara

AU - Marano, Massimo

AU - Marano, Pietro

AU - Marconi, Roberto

AU - Mazzucchi, Sonia

AU - Meco, Giuseppe

AU - Minafra, Brigida

AU - Morgante, Francesca

AU - Pacchetti, Claudio

AU - Pierantozzi, Mariangela

AU - Pontieri, Francesco E.

AU - Riboldazzi, Giulio

AU - Ricchi, Valeria

AU - on behalf of the

AU - ITALIAN LEVODOPA CARBIDOPA INTESTINAL GEL WORKING GROUP

N1 - Ricercatori distaccati presso IRCCS a seguito Convenzione esclusiva con Università di Bologna (Calandra Buonaura Giovanna, Cortelli Pietro)

PY - 2017/5/1

Y1 - 2017/5/1

N2 - 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.

AB - 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.

KW - Levodopa-carbidopa intestinal gel infusion

KW - Neuropathy

KW - Parkinson's disease

KW - Withdrawal

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