Impact of supporting people with advanced Parkinson’s disease on carer’s quality of life and burden

Nicola Modugno, Angelo Antonini, Alessandro Tessitore, Pietro Marano, Francesco Ernesto Pontieri, Nicola Tambasco, Margherita Canesi, Giovanni Fabbrini, Mariachiara Sensi, Rocco Quatrale, Paolo Solla, Giovanni Defazio, Gabriella Melzi, Giuliana Gualberti, Leonardo Lopiano

Research output: Contribution to journalArticlepeer-review


Purpose: The aim of this study was to assess the burden and the quality of life (QoL) perceived by caregivers assisting advanced Parkinson’s disease (PD) patients. Patients and Methods: Consecutive advanced PD patients treated with levodopa/carbidopa intestinal gel (LCIG) or continuous subcutaneous apomorphine infusion (CSAI) or care as usual (CU) and their care partners were recruited during routine visits according to a cross-sectional design. Caregiver’s distress was assessed by Zarit Burden Interview (ZBI) and a QoL survey to evaluate and understand the burden experienced by care partners during family and working activities. Results: A total of 126 patients (53 LCIG, 19 CSAI and 54 CU) and their care partners were enrolled. The ZBI score boxplot showed that LCIG and CU populations have a similar distribution (ZBI inter-quartile range [IQR] values respectively 18–42 for LCIG and 19–43 for CU group), while the CSAI group has a wider score range (IQR 16–52). Caregivers assisting patients in treatment with LCIG have more time to perform family or household duties (p=0.0022), or to engage in leisure activities (p=0.0073) compared to CU, while no difference was found when compared to CSAI group. Approximately 50% of the care partners showed mood changes in the last 6 months and LCIG and CSAI had less impact on caregiver’s mood compared to CU. Patients treated with LCIG were more independent in taking a bath or shower without assistance and were more able to move and walk without assistance. Conclusion: Care partners of advanced PD patients treated with device-aided therapies have more time for their own life and a better perception of their QoL with a tendency to an improvement of mood compared with those of patients treated with CU.

Original languageEnglish
Pages (from-to)2899-2912
Number of pages14
JournalNeuropsychiatric Disease and Treatment
Publication statusPublished - 2020


  • Advanced Parkinson’s disease
  • Caregiver burden
  • Intestinal infusion
  • Levodopa/carbidopa
  • Quality of life; QoL

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Biological Psychiatry


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