@article{5234f92892594926ac5b8de522241df7,
title = "Impact of supporting people with advanced Parkinson{\textquoteright}s disease on carer{\textquoteright}s quality of life and burden",
abstract = "Purpose: The aim of this study was to assess the burden and the quality of life (QoL) perceived by caregivers assisting advanced Parkinson{\textquoteright}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{\textquoteright}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{\textquoteright}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.",
keywords = "Advanced Parkinson{\textquoteright}s disease, Caregiver burden, Intestinal infusion, Levodopa/carbidopa, Quality of life; QoL",
author = "Nicola Modugno and Angelo Antonini and Alessandro Tessitore and Pietro Marano and Pontieri, {Francesco Ernesto} and Nicola Tambasco and Margherita Canesi and Giovanni Fabbrini and Mariachiara Sensi and Rocco Quatrale and Paolo Solla and Giovanni Defazio and Gabriella Melzi and Giuliana Gualberti and Leonardo Lopiano",
note = "Funding Information: This work was funded by AbbV ie Srl. AbbV ie participated in the study design, research, data collection, analysis, and interpretation of data, and writing, reviewing, and approving the publication. Funding Information: N. Modugno reports fees for oral presentations from AbbV ie, UCB, Zambon and Bial. A. Antonini has received compensation for consultancy and speaker related activities from UCB, Boehringer Ingelheim, AbbV ie, Zambon, Bial, Ever Pharma, Neuroderm, Therevance, Biogen; he receives research support from Chiesi Pharmaceuticals, Lundbeck, Horizon 2020 - PD_Pal Grant 825,785, Ministry of Education University and Research (MIUR) Grant ARS01_01081. He serves as consultant for Boehringer– Ingelheim for legal cases on pathological gambling”. A. T essitore declares speaking honoraria and travel expenses for attending meetings from AbbV ie. P . Marano declares consultancy fees from AbbV ie. F .E. Pontieri received Funding Information: honoraria for speaker activity from Zambon, AbbV ie, Bial, compensation for serving in the Steering Committee of an international grant from AbbV ie; he also received an unconditioned grant for research activity from Zambon. N. T ambasco received speaker honoraria from Lundbeck and AbbV ie. M. Canesi declares grants from UCB, Zambon and Ralpharma. G. Fabbrini received payment for International Congress from Zambon; he is also the editorial board for Parkinsonism and Related Disorders. R. Quatrale has received honoraria for consulting services and symposia from AbbV ie and Zambon. P . Solla has received honoraria for participation in advisory boards from AbbV ie. G. Gualberti, G. Melzi, are employees of AbbV ie Italy and may own AbbV ie stocks/options. The other authors report no conflicts of interest in this work. Publisher Copyright: {\textcopyright} 2020 Modugno et al. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",
year = "2020",
doi = "10.2147/NDT.S256217",
language = "English",
volume = "16",
pages = "2899--2912",
journal = "Neuropsychiatric Disease and Treatment",
issn = "1176-6328",
publisher = "Dove Medical Press Ltd.",
}