Impact of Supporting People with Advanced Parkinson’s Disease on Carer’s Quality of Life and Burden

Nicola Modugno,1 Angelo Antonini,2 Alessandro Tessitore,3 Pietro Marano,4 Francesco Ernesto Pontieri,5,6 Nicola Tambasco,7 Margherita Canesi,8,9 Giovanni Fabbrini,10,11 Mariachiara Sensi,12 Rocco Quatrale,13 Paolo Solla,14 Giovanni Defazio,14 Gabriella Melzi,15 Giuliana Gualberti,15 Leonardo Lopiano16 1Neurology Unit, IRCCS Neuromed, Pozzilli, Italy; 2Parkinson and Movement Disorder Unit, Department of Neuroscience, University of Padua, Padua, Italy; 3Department of Medical and Surgery Sciences, University of Campania, “Luigi Vanvitelli”, Naples, Italy; 4Casa di Cura Madonna del Rosario, Raggruppamento di Riabilitazione, Catania, Italy; 5Department NESMOS, “Sapienza” University, Sant’Andrea Hospital, Roma, Italy; 6IRCCS Fondazione Santa Lucia, Roma, Italy; 7Department of Neurology, Perugia General Hospital and University of Perugia, Perugia, Italy; 8Dipartimento di Riabilitazione Malattia di Parkinson e Disordini del Movimento, Gravi Cerebrolesioni Acquisite, Italia Hospital - Ospedale “Moriggia-Pelascini”, Gravedona ed Uniti, Como, Italy; 9Centro Parkinson e Disordini del Movimento, CTO, G Pini, Milano, Italy; 10Department of Human Neurosciences, Sapienza University of Rome, Rome, Italy; 11IRCCS Neuromed, Pozzilli, Isernia, Italy; 12Neurology Unit, Hospital Sant’Anna, Ferrara, Italy; 13Neurology Unit, Hospital dell’Angelo, Mestre, VE, Italy; 14Neurology Unit, Policlinico Universitario Monserrato, Cagliari, Italy; 15Medical Department, AbbVie Srl, Roma, Italy; 16Department of Neuroscience “Rita Levi Montalcini” University of Torino, Azienda Ospedaliero-Universitaria Città Della Salute e Della Scienza di Torino, Torino, ItalyCorrespondence: Gabriella MelziAbbVie Srl, Viale dell’Arte 25, Roma 00144, ItalyTel +39 06928924346Email gabriella.melzi@abbvie.comPurpose: 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.Keywords: advanced Parkinson’s disease, levodopa/carbidopa, intestinal infusion, caregiver burden, quality of life; QoL