Caregiver Burden and Quality of Life in Late Stage Parkinson's Disease.
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ABSTRACT:
SUBMITTER: Rosqvist K
PROVIDER: S-EPMC8773513 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundApathy is a prevalent, multidimensional neuropsychiatric condition in Parkinson's disease (PD). Several authors have proposed apathy subtypes in PD, but no study has examined the classification of PD patients into distinct apathy subtypes, nor has any study examined the clinical utility of doing so.ObjectivesThe current study used a data-driven approach to explore the existence and associated clinical characteristics of apathy subtypes in PD.MethodThe Apathy Scale (AS) was administered to 157 non-demented individuals with PD. Participants were classified into apathy subgroups through cluster analysis. Differences among apathy subtypes on external clinical indicators were explored across apathy subgroups.ResultsIndividuals with PD were classified into three subgroups: a Non-Apathetic group with low levels of apathy symptoms, a Low Interest/Energy group, characterized by elevated symptoms of low interest/energy and minimal low initiation/emotional indifference symptoms, and a Low Initiation group, characterized by an absence of low interest/energy symptoms and elevated levels of low initiation/emotional indifference symptoms. Both Low Interest/Energy and Low Initiation groups exhibited worse depression, fatigue, anxiety, health-related quality of life, and caregiver burden than the Non-Apathetic subgroup. The Low Initiation group exhibited worse overall cognition, emotional well-being, state anxiety, communicative ability, and functional ability than the Low Interest/Energy group. Importantly, disease-related characteristics did not differ across apathy symptom subgroups.ConclusionsNon-demented PD patients can be separated into distinct apathy symptom subgroups, which are differentially associated with important clinical variables. Apathy subgroup membership may reflect disruption to different neural systems independent of disease progression.
| S-EPMC7780962 | biostudies-literature
Project description:BackgroundCaregivers experience high strain related to care giving. There is increasing interest in examining the caregiver burden of cardiac patients and studying the characteristics of caregivers.PurposeTo explore the correlation between quality of life cardiac patients and caregiver's burden.MethodsA cross-sectional design using a convenience sample of caregivers and patients with cardiac conditions. Sociodemographic sheet, Dutch Objective Burden Inventory (DOBI), and Quality of Life (QLI-Cardiac 4). Linear regression was used to explore the predictors.Results200 caregivers and 200 patients with cardiac diseases completed the study. The overall mean scores of both DOBI and QLI-4 indicated moderate results 1.51(SD 0.4), 19.8 (SD 4.7) respectively. Predictors of caregiver burden were young, less educated caregivers and high QoL of cardiac patients.ConclusionCaregivers should receive more support and training from healthcare providers to develop their coping and resilience skills in a way that decreases their care burden and improves their quality of care and self-confidence.
| S-EPMC7398537 | biostudies-literature
Project description:BackgroundParkinson's disease (PD) is typically considered as a disease of the elderly. However, there is a sizeable subgroup of patients where PD starts at a younger age, known as young-onset PD (YOPD). We evaluated the differences in quality of life and caregiver strain between YOPD and later onset PD (LOPD) patients in a large cohort.MethodsIn collaboration with the Parkinson Foundation Quality Improvement Initiative (PF-QII), we conducted a retrospective three-year analysis on 962 PD patients of the QII database (starting date May 2016). Of these, 272 patients had YOPD, and 690 had LOPD. The Parkinson's Disease Questionnaire-39 (PDQ-39) total score served as primary outcome measure. Furthermore, we analysed group differences in modified caregiver strain index (MCSI) total score, three cognition functions, and number of falls. A regression analysis adjusting for covariates was used to assess the association of age at onset with PDQ-39 and MCSI.ResultsPDQ scores were better in YOPD patients, MCSI scores on social constraint were lower in YOPD patients, but scores on financial constraint were higher in this group. After adjusting for covariates, YOPD patients had better quality of life and less caregiver strain at all follow-up moments, but not at baseline. Decline over time for all outcomes was lower in the YOPD group compared to the LOPD group. Cognitive functioning and number of falls progressed slower in the YOPD group compared to the LOPD group.ConclusionCompared to LOPD patients, YOPD patients had a better quality of life, less caregiver strain, fewer falls and better cognitive functioning after their first follow-up visit, and also a slower decline over time.
| S-EPMC7914232 | biostudies-literature
Project description:IntroductionCaregiver burden is high among caregivers of PD patients (CPD). Neuropsychiatric symptoms are leading contributors to CPD burden, but whether different symptoms differentially impact domains of caregiver burden is not known. Our objective was to examine which neuropsychiatric symptoms and demographic factors contribute to different domains of caregiver burden in PD.MethodsThis was a cross-sectional online survey study. Participants were recruited from the Fox Insight (FI) study and were eligible if they identified themselves as a CPD. The primary outcome was the Caregiver Burden Inventory (CBI) total score and its 5 sub-domain scores. The Neuropsychiatric Inventory Questionnaire (NPI-Q) assessed caregiver-reported neuropsychiatric symptoms in the care recipient. Multivariable linear regression models were used to characterize the associations between NPI-Q symptom severity scores and CBI scores. Covariates were caregiver age, sex, education, and caregiving duration.ResultsThe sample consisted of 450 CPD, mean age 65.87 (SD 10.39) years, 74% females. After adjusting for covariates, CBI total score was predicted by NPI-Q total score (β = 1.96, p < 0.001); model adjusted R2 = 39.2%. Anxiety severity had the largest effect size [standardized β (sβ) = 0.224] on the time-dependency domain, which was also associated with female sex (sβ = - 0.133) and age (sβ = 0.088). Severity of disinhibition (sβ = 0.218), agitation (sβ = 0.199), and female sex (sβ = 0.104) were associated with greater emotional burden.ConclusionOur findings indicate that demographic characteristics and specific neuropsychiatric symptoms contribute differentially to domains of caregiver burden. Tailored interventions to support CPD are needed.
| S-EPMC8289810 | biostudies-literature
Project description:IntroductionThe profile of cognitive impairment associated with the late stages of Parkinson's disease (LSPD) is rarely reported. Its characterization is necessary to better understand the cognitive changes that occur as the disease progresses and to better contribute to its management.MethodsIn this cross-sectional study, we characterized the cognitive profile of LSPD patients using the comprehensive assessment methodology proposed by the International Parkinson and Movement Disorders Society Task Force. The association of clinical and demographic variables with dementia diagnosis was also investigated using binary logistic regression analysis.ResultsEighty-four LSPD patients were included (age 75.4 ± 6.9; disease duration 16.9 ± 7.5). Fifty-four (64.3%) were classified as demented and presented a global impairment cognitive profile. In the nondemented group (N = 30), 25 (83.3%) LSPD patients met the diagnostic criteria for mild cognitive impairment, mostly with multiple domain impairment (96.0%) and a heterogeneous profile. Memory was the most frequent and severely impaired cognitive domain in both groups. Disease disability, orientation, complex order comprehension, verbal learning, and visuoconstructive abilities were significantly associated with dementia diagnosis (p < .05).ConclusionsCognitive impairment in multiple domains was common in LSPD patients. The most frequent and prominent deficits were in the memory domain, with a strong interference from attention impairment. Disease disability, orientation, complex order comprehension, verbal learning, and visuoconstructive abilities proved to be important determinants for dementia diagnosis.
| S-EPMC9014988 | biostudies-literature
Project description:BackgroundMetachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related impacts of MLD across several key domains including symptoms, treatment burden, time investment, social and emotional well-being, and professional and financial impact.ResultsData were collected through moderator-assisted web survey and telephone interviews. The survey was developed with extensive input from clinical experts and MLD patient advocacy groups. The EQ-5D-5L questionnaire was administered during follow-up interviews. The total sample consisted of parents of MLD patients in the US (n = 10), France (n = 10), Germany (n = 6), UK (n = 5), Belgium (n = 1), and Norway (n = 2). The impact of MLD is evident from the EQ-5D-5L scores, which indicate utility values for caregivers below respective national population norms and a higher proportion of caregivers reporting problems with anxiety/depression. Time involved for care was demonstrated by a mean of 4.1 inpatient and 29.6 outpatient hospital visits in the previous 12-month period. These commitments place stress on familial relationships with 50% of caregivers reporting their child's MLD diagnosis had negatively impacted their relationship with their spouse/partner. Professionally, 76.5% of caregivers stopped working or switched to part-time employment following their child's MLD diagnosis, and most acknowledged caring for their child had affected their potential for career progression or promotion. Differences are also observed based on late infantile versus juvenile onset MLD, time since diagnosis, and for transplanted patients versus those who received palliative care only.ConclusionsThis multinational study demonstrates that MLD consistently negatively affects many aspects of caregivers' lives including health, relationships, and professional status, irrespective of location. We expect that the results of this study are generalizable to other countries. This study enhances our understanding of MLD caregiver impacts, which could improve patient care and assist in identifying support for individuals with MLD and their families.
| S-EPMC9438185 | biostudies-literature
Project description:Subthalamic deep brain stimulation is an advanced therapy that typically improves quality of life for persons with Parkinson's disease (PD). However, the effect on caregiver burden is unclear. We recruited 64 persons with PD and their caregivers from a movement disorders clinic during the assessment of eligibility for subthalamic DBS. We used clinician-, patient- and caregiver-rated instruments to follow the patient-caregiver dyad from pre- to postoperative status, sampling repeatedly in the postoperative period to ascertain fluctuations in phenotypic variables. We employed multivariate models to identify key drivers of burden. We clustered caregiver-rated variables into 'high' and 'low' symptom groups and examined whether postoperative cluster assignment could be predicted from baseline values. Psychiatric symptoms in the postoperative period made a substantial contribution to longitudinal caregiver burden. The development of stimulation-dependent mood changes was also associated with increased burden. However, caregiver burden and caregiver-rated psychiatric symptom clusters were temporally stable and thus predicted only by their baseline values. We confirmed this finding using frequentist and Bayesian statistics, concluding that in our sample, subthalamic DBS for PD did not significantly influence caregiver burden or caregiver-rated psychiatric symptoms. Specifically, patient-caregiver dyads with high burden and high levels of psychiatric symptoms at baseline were likely to maintain this profile during follow-up. These findings support the importance of assessing caregiver burden prior to functional neurosurgery. Furthermore, they suggest that interventions addressing caregiver burden in this population should target those with greater symptomatology at baseline and may usefully prioritise psychiatric symptoms reported by the caregiver.
| S-EPMC5904120 | biostudies-literature
Project description:Brain iron promotes neurodegeneration in Parkinson's disease (PD). While hemoglobin (Hb) is the most abundant source of peripheral iron in humans, its relationship with PD is uncertain. This report examines the association between Hb in late life and PD incidence. From 1991 to 1993, Hb was measured in 3507 men in the Honolulu-Asia Aging Study. Men were aged 71-93 years and without PD. Participants were followed until 2001 for incident PD. Hb levels declined markedly with age. For men aged 71-75 years, 14.8% had levels < 14 g/dL versus 53.6% in those aged 86 and older (p < 0.001). During follow-up, 47 men developed PD (19.8/10,000 person-years). After age adjustment, PD incidence rose significantly from 10.3 to 34.9/10,000 person-years as Hb increased from < 14 to ? 16 g/dL (p = 0.024; relative hazard 3.2; 95% confidence interval, 1.2-8.9). Associations persisted after accounting for early mortality and adjustments for concomitant risk factors. While Hb declines with advancing age, evidence suggests that Hb that remains high in elderly men is associated with an increased risk of PD.
| S-EPMC3006667 | biostudies-literature
Project description:Late-stage Parkinson's disease (LSPD) patients are highly dependent on activities of daily living and require significant medical needs. In LSPD, there is a significant caregiver burden and greater health economic impact compared to earlier PD stages. The clinical presentation in LSPD is dominated by motor and non-motor symptoms (NMS) that most of the time have a sub-optimal to no response to dopaminergic treatment, especially when dementia is present. Non-pharmacological interventions, including physiotherapy, cognitive stimulation, speech, occupational therapy, and a specialized PD nurse, assume a key role in LSPD to mitigate the impact of disease milestones or prevent acute clinical worsening and optimize the management of troublesome NMS. However, the feasibility of these approaches is limited by patients' cognitive impairment and the difficulty in delivering care at home. The present care challenge for LSPD is the ability to offer a person-centered, home-delivered palliative care model based on Advanced Care Planning. An ongoing European multicentric project, PD_Pal, aims to address this challenge.
| S-EPMC9147917 | biostudies-literature
Project description: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.
| S-EPMC5937896 | biostudies-literature