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J Neurol. 2018 May;265(5):1124-1137. doi: 10.1007/s00415-018-8816-9. Epub 2018 Mar 7.

Caregiver burden and its related factors in advanced Parkinson's disease: data from the PREDICT study.

Author information

1
First Division of Neurology, University of Campania, "Luigi Vanvitelli", Napoli, Italy.
2
Nuova Casa di Cura D'Anna, Palermo, Italy.
3
Neurology Unit, IRCCS Neuromed, Pozzilli, IS, Italy.
4
Department NESMOS, "Sapienza" University, Sant'Andrea Hospital, Rome, Italy.
5
Perugia General Hospital and University of Perugia, Perugia, Italy.
6
Centro Specialistico Ortopedico Traumatologico G. Pini-CTO Milano, Milan, Italy.
7
Sapienza University, Rome, Italy.
8
Department of Neuroscience, University of Torino, Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino, Turin, Italy.
9
Neurology Unit, Hospital Sant'Anna Ferrara, Ferrara, Italy.
10
Neurology Unit, Hospital dell'Angelo, Mestre, VE, Italy.
11
Neurology Unit, Policlinico Universitario Monserrato, Cagliari, Italy.
12
AbbVie Srl, SR 148 Pontina, 04011, Campoverde, LT, Italy. gabriella.melzi@abbvie.com.
13
AbbVie Srl, SR 148 Pontina, 04011, Campoverde, LT, Italy.
14
Parkinson and Movement Disorders Unit, Department of Neuroscience, University of Padua, Padua, Italy.

Abstract

INTRODUCTION:

Caring for a person with Parkinson's disease (PD) is associated with an increased risk of psychiatric morbidity and persistent distress. The objective of this study was to describe the burden and the related factors of caregivers of advanced PD (APD) patients either treated with continuous dopaminergic delivery systems or standard therapy.

METHODS:

This cross-sectional, epidemiologic study conducted in 13 Italian sites enrolled PD patients treated with continuous dopaminergic delivering systems [either levodopa/carbidopa intestinal gel (LCIG) infusion or continuous subcutaneous apomorphine infusion (CSAI)] or continuation of standard of care (SOC) with a caregiver. Patient quality of life (QoL) and caregiver burden were assessed using the Parkinson's Disease Questionnaire (PDQ-8) and Zarit Burden Inventory (ZBI), respectively.

RESULTS:

126 patients (mean age 69.3 ± 8 years) and their caregivers (mean age 57.9 ± 12.9) were enrolled. Most caregivers were spouses. Fifty-three patients were treated with LCIG, 19 with CSAI, and 54 with SOC. Mean ZBI scores were 29.6 ± 14.4 for LCIG, 35.8 ± 20.2 for CSAI, and 31.4 ± 16.0 for SOC. Caregivers of LCIG, CSAI, and SOC patients showed no burden or mild/moderate burden in 74, 53, and 63% of the cases, respectively. Mean PDQ-8 scores were 11.25 ± 5.67, 11.26 ± 5.55, and 14.22 ± 6.51 in LCIG, CSAI, and SOC patients. Neurologists considered patients "very much or much improved" in 89, 58, and 13% of the LCIG, CSAI, and SOC groups using the Clinical Global Impression-Global Improvement Scale. Predictors significantly associated with caregiver burden were patients and caregivers' judgment of QoL and caregivers' need to change work.

CONCLUSIONS:

Caregiver burden showed a tendency to be lower when patients are treated with LCIG than with CSAI or SOC.

KEYWORDS:

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

PMID:
29516169
PMCID:
PMC5937896
DOI:
10.1007/s00415-018-8816-9
[Indexed for MEDLINE]
Free PMC Article

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