Top

Published in:

Open Access 01-05-2018 | Original Communication

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

Authors: Alessandro Tessitore, Pietro Marano, Nicola Modugno, Francesco E. Pontieri, Nicola Tambasco, Margherita Canesi, Anna Latorre, Leonardo Lopiano, Mariachiara Sensi, Rocco Quatrale, Paolo Solla, Giovanni Defazio, Gabriella Melzi, Anna Maria Costanzo, Giuliana Gualberti, Umberto di Luzio Paparatti, Angelo Antonini

Published in: Journal of Neurology | Issue 5/2018

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.

Bhimani R (2014) Understanding the burden on caregivers of people with Parkinson’s: a scoping review of the literature. Rehabil Res Pract 2014:718527. https://doi.org/10.1155/2014/718527 PubMedPubMedCentral

Raggi A, Leonardi M, Covelli V et al (2012) Concordance between severity of disease, prevalence of nonmotor symptoms, patient-reported quality of life and disability and use of medication in Parkinson’s disease. Neurol Sci 33:847–853CrossRefPubMed

D’Amelio M, Terruso V, Palmeri B et al (2009) Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurol Sci 30:171–174CrossRefPubMed

O’Connor EJ, McCabe MP (2011) Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study. Qual Life Res 20:703–711CrossRefPubMed

Pushmann A, Brighina L, Markopoulou K et al (2015) Clinically meaningful parameters of progression and long-term outcome of Parkinson disease: an international consensus statement. Parkinsonism Relat Disord 21:675–682CrossRef

Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ (2012) Quality of life and burden in caregivers for patients with Parkinson’s disease: concepts, assessment and related factors. Expert Rev Pharmacoecon Outcomes Res 12:221–230CrossRefPubMed

Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ et al (2015) Neuropsychiatric symptoms and caregiver’s burden in Parkinson’s disease. Parkinsonism Relat Disord 21:629–634CrossRefPubMed

Ozdilek B, Gunal DI (2012) Motor and non-motor symptoms in Turkish patients with Parkinson’s disease affecting family caregiver burden and quality of life. J Neuropsychiatry Clin Neurosci 24:478–483CrossRefPubMed

Chaudhuri KR, Healy DG, Schapira AH (2006) Non-motor symptoms of Parkinson’s disease: diagnosis and management. Lancet Neurol 5:235–245CrossRefPubMed

10.

Greenwell K, Gray WK, van Wersch A et al (2015) Predictors of the psychosocial impact of being a carer of people living with Parkinson’s disease: a systematic review. Parkinsonism Relat Disord 21:1–11CrossRefPubMed

11.

Schrag A, Hovris A, Moreley D et al (2006) Caregiver-burden in parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord 12:35–41CrossRefPubMed

12.

Oh YS, Lee JE, Lee PH et al (2015) Neuropsychiatric symptoms in Parkinson’s disease dementia are associated with increased caregiver burden. J Mov Disord 8:26–32CrossRefPubMedPubMedCentral

13.

Sensi M, Cossu G, Mancini F et al., 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 Relat Disord 38:90–92

14.

Choi G, Jacqueline RH, Abigail DR et al (2013) Comparison of patient and caregiver assessment of patient disability in Parkinson’s disease. Mov Disord 28(Suppl 1):S103–S104

15.

Worth PF (2013) When the going gets tough: how to select patients with Parkinson’s disease for advanced therapies. Pract Neurol 13:140–152CrossRefPubMed

16.

Lokk J (2011) Lack of information and access to advanced treatment for Parkinson’s disease patients. J Multidiscip Healthc 4:433–439CrossRefPubMedPubMedCentral

17.

Chattat R, Cortesi V, Izzicupo F et al (2011) The Italian version of the Zarit Burden Interview: a validation study. Int Psychogeriatr 23:797–805CrossRefPubMed

18.

Peto V, Jenksinson C, Fitzpatrick R (1998) PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. J Neurol 245:S10–S14CrossRefPubMed

19.

GuyW (1976) ECDEU Assessment Manual for Psychopharmacology—Revised (DHEW Publ No ADM 76-338). Rockville, MD, US Department of Health, Education, and Welfare, Public Health Service, Alcohol, Drug Abuse, and Mental Health Administration, NIMH Psychopharmacology Research Branch, Division of Extramural Research Programs, pp 218–222

20.

Santos-Garcia D, Anon MJ, Fuster-Sanjurjo L, de la Fuente-Fernández R (2012) Duodenal levodopa/carbidopa infusion therapy in patients’ with advanced Parkinsons’ disease leads to improvement in caregivers’ stress and burden. Eur J Neurol 19(9):1261–1265CrossRefPubMed

21.

Hagell P, Alvariza A, Westergren A et al (2017) Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit Burden Interview. J Pain Symptom Manag 53:272–278CrossRef

22.

Odin P, Chaudhuri R, Slevin JT et al (2015) National Steering Committees, collective physician perspectives on non-oral medication approaches for the management of clinically relevant unresolved issues in Parkinson’s disease: consensus from an international survey and discussion program. Parkinsonism Relat Disord 21:1133–1144CrossRefPubMed

23.

Antonini A, Odin P, Kleinman L et al (2015) Implementing a Delphi panel to improve understanding of patient characteristics of advanced Parkinson’s disease. In: 19th international congress of Parkinson’s disease and movement disorders, June 14–18, San Diego, California, United States

24.

Grün D, Pieri V, Vaillant M et al (2016) Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc 17:626–632CrossRefPubMed

25.

Chaudhuri KR, Sauerbier A, Rojo JM et al (2015) The burden of non-motor symptoms in Parkinson’s disease using a self-completed non-motor questionnaire: a simple grading system. Parkinsonism Relat Disord 21:287–291CrossRefPubMed

26.

Lewis CJ, Maier F, Horstkötter N et al (2015) The impact of subthalamic deep brain stimulation on caregivers of Parkinson’s disease patients: an exploratory study. J Neurol 262:337–345CrossRefPubMed

27.

Antonini A, Poewe W, Chaudhuri KR et al (2017) Levodopa-carbidopa intestinal gel in advanced Parkinson’s: final results of the GLORIA registry. Parkinsonism Relat Disord 45:13–20CrossRefPubMed

28.

Giladi N, Hilel A, Gurevich T (2014) Interdisciplinary teamwork for the treatment of people with Parkinson’s disease and their families. Curr Neurol Neursci Rep 14:493–499CrossRef

29.

van der Eijk M, Nijhuis FAP, Faber MJ et al (2013) Moving from physician-centered care towards patient-centered care for Parkinson’s disease patients. Parkinsonism Relat Disord 19:923–927CrossRefPubMed

Title: Caregiver burden and its related factors in advanced Parkinson’s disease: data from the PREDICT study
Authors: Alessandro Tessitore
Pietro Marano
Nicola Modugno
Francesco E. Pontieri
Nicola Tambasco
Margherita Canesi
Anna Latorre
Leonardo Lopiano
Mariachiara Sensi
Rocco Quatrale
Paolo Solla
Giovanni Defazio
Gabriella Melzi
Anna Maria Costanzo
Giuliana Gualberti
Umberto di Luzio Paparatti
Angelo Antonini
Publication date: 01-05-2018
Publisher: Springer Berlin Heidelberg
Published in: Journal of Neurology / Issue 5/2018
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI: https://doi.org/10.1007/s00415-018-8816-9

At a glance: The STEP trials

Springer Medicine

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

Abstract

Introduction

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Introduction

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 5/2018

Short- and long-term clinical outcomes of use of beta-interferon or glatiramer acetate for people with clinically isolated syndrome: a systematic review of randomised controlled trials and network meta-analysis

Correction to: Secondary antibody deficiency: a complication of anti-CD20 therapy for neuroinflammation

Neurophysiology and neurochemistry of corticobasal syndrome

Adult normative values for the PATA Rate Test

Within-patient fluctuation of brain volume estimates from short-term repeated MRI measurements using SIENA/FSL

Why acute unilateral vestibular midbrain lesions rarely manifest with rotational vertigo: a clinical and modelling approach to head direction cell function