The long‐term direct and indirect economic burden among Parkinson's disease caregivers in the United States

Abstract

Background Parkinson's disease is a progressive, disabling neurodegenerative disorder associated with significant economic burden for patients and caregivers. The objective of this study was to compare the direct and indirect economic burden of Parkinson's patients’ caregivers with demographically matched controls in the United States, in the 5 years after first diagnosis of Parkinson's disease. Methods Policyholders (18‐64 years old) linked to a Parkinson's disease patient (≥2 diagnoses of Parkinson's disease; first diagnosis is the index date) from January 1, 1998 to March 31, 2014, were selected from a private‐insurer claims database and categorized as Parkinson's caregivers. Eligible Parkinson's caregivers were matched 1:5 to policyholders with a non‐Parkinson's dependent (controls). Multivariable regression adjusted for baseline characteristics estimated direct costs (all‐cause insurer cost [medical and prescription] and comorbidity‐related medical costs; patient out‐of‐pocket costs) and indirect costs (disability and medically related absenteeism costs). Income progression was also compared between cohorts. Results A total of 1211 eligible Parkinson's caregivers (mean age, 56 years; 54% female) were matched to 6055 controls. In adjusted analyses, Parkinson's caregivers incurred significantly higher year 1 total all‐cause insurer costs ($8999 vs $7117) and medical costs ($7081 vs $5568) (both P < 0.01) and higher prescription costs (range for years 1‐5, $2506‐2573 vs $1405‐$1687) and total out‐of‐pocket costs ($1259‐1585 vs $902‐$1192) in years 1‐5 (all P < 0.01). Parkinson's caregivers had significantly higher adjusted indirect costs in years 1‐3 (range for years 1‐3, $2054‐$2464 vs $1681‐$1857; all P < 0.05) and higher cumulative income loss over 5 years ($5967 vs $2634 by year 5; P for interaction = 0.03). Conclusions Parkinson's caregivers exhibited higher direct and indirect costs and greater income loss compared with matched controls. © 2018 International Parkinson and Movement Disorder Society © 2018 The Authors. Movement Disorders published by Wiley Periodicals, Inc. on behalf of International Parkinson and Movement Disorder Society.

Belastungen in der Betreuung von Parkinson-Patientinnen und - Patienten

“…2 Faktoren der Betreuungsbelastung vonseiten der Betreuungsperson Betreuerin (i.V. zu Betreuer) [22,65] Pflegedauer, nächtliche Pflege [15,34] Ökonomische Belastungen [67,68] Mangel an soziale Unterstützung [66,69] Beeinträchtigung der psychischen Gesundheit (Depression, Angst, Stress), negative Emotionen und belastete emotionale Beziehung zum Pflegling [14,34,37,66,70] ▶Tab.…”

Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

“…In particular, patients' anxiety (Carod-Artal et al 2013;Leiknes et al 2010), depression (Aarsland et al 1999;Martínez-Martín et al 2007), and cognitive impairment (Coelho et al 2015) are an important predictor of caregiver burden. The identification and timely treatment of caregiver burden also have a substantial economic benefit for society in addition to the health-related benefits to the patient (Martinez-Martin et al 2019a). So far, to our knowledge, no data on caregiver burden have been available for dystonia.…”

Validating the Parkinson’s disease caregiver burden questionnaire (PDCB) in German caregivers of advanced Parkinson’s disease patients

“…First published online 25 March 2019. caregivers are exposed (Schmotz et al, 2017). Caregiver burden and burnout represent a limit to the health care of PD patients at home (Bruno et al, 2016) and may also be considered relevant under health economic aspects because indirect costs rise with caregivers' increasing lack of time for their regular work (Arno et al, 1999;Huse et al, 2005;Martinez-Martin et al, 2019).…”