Caregiver burden in Parkinson's disease

Martinez‐Martín, Pablo; Forjaz, Maria João; Frades-Payo, Belén; Rusiñol, Àngels Bayés; Fernández-García, José Manuel; Benito‐León, Julián; Arillo, V. Campos; Barberà, Miquel; Sordo, Margarita Pondal; Catalán, María José

doi:10.1002/mds.21355

Cited by 231 publications

(290 citation statements)

References 38 publications

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“…963,964 Physicians should also recognize that pessimism among caregivers can predict poor outcomes for both the patient and the caregiver. 965,966 Education. Education provides the patient with PD and their caregiver with an understanding of their disease and a sense of control even as the disease continues to progress.…”

Section: Nonpharmacologic Treatments For Pdmentioning

confidence: 99%

The scientific and clinical basis for the treatment of Parkinson disease (2009)

Olanow¹,

Stern²,

Sethi³

2009

Neurology

760

658

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Parkinson disease (PD) is an age-related neurodegenerative disorder that affects as many as 1-2% of persons aged 60 years and older. With the aging of the population, the frequency of PD is expected to increase dramatically in the coming decades. Current therapy is largely based on a dopamine replacement strategy, primarily using the dopamine precursor levodopa. However, chronic treatment is associated with the development of motor complications, and the disease is inexorably progressive. Further, advancing disease is associated with the emergence of features such as freezing, falling, and dementia which are not adequately controlled with dopaminergic therapies. Indeed, it is now appreciated that these nondopaminergic features are common and the major source of disability for patients with advanced disease. Many different therapeutic agents and treatment strategies have been evaluated over the past several years to try and address these unmet medical needs, and many promising approaches are currently being tested in the laboratory and in the clinic. As a result, there are now many new therapies and strategic approaches available for the treatment of the different stages of PD, with which the treating physician must be familiar in order to provide patients with optimal care. This monograph provides an overview of the management of PD patients, with an emphasis on pathophysiology, and the results of recent clinical trials. It is intended to provide physicians with an understanding of the different treatment options that are available for managing the different stages of the disease and the scientific rationale of the different approaches. 1 PD is the second most common neurodegenerative disorder, with an average age at onset of about 60 years. An estimated 5 million people throughout the world have PD, with 1 million individuals each in the United States and in Europe with the disorder. PD affects approximately 0.3% of the population and 1% to 2% of those older than 60 years.2 With the aging of the population and the substantial increase in the number of at-risk individuals older than 60 years, it is anticipated that the prevalence of PD will increase dramatically in the coming decades.

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Section: Nonpharmacologic Treatments For Pdmentioning

confidence: 99%

The scientific and clinical basis for the treatment of Parkinson disease (2009)

Olanow¹,

Stern²,

Sethi³

2009

Neurology

760

658

View full text Add to dashboard Cite

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“…The caregiver was defined as "any person who, without being a professional or belonging to a social support network, usually lives with the patient and, in some way, is directly implicated in the patient's care or is directly affected by the patient's health problem" [2]. Caregiver inclusion criteria were: age 18 years or older, ability to complete self-administered questionnaires in Spanish, and willingness to sign informed consent.…”

Section: Samplementioning

confidence: 99%

“…Factors influencing caregiver burden are related to caregiver and patient characteristics, including PD manifestations and consequences [2]. Patients differ substantially on their degree of disability, motor and non-motor symptom profiles, and complications of therapy [3], all of which may have a differential impact on caregiver burden.…”

Section: Introductionmentioning

confidence: 99%

Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease

Martinez‐Martín

Rodríguez‐Blázquez

Forjaz

et al. 2015

Parkinsonism & Related Disorders

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166

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Introduction: In Parkinson's disease (PD), neuropsychiatric symptoms (NPS) can be particularly burdensome for caregivers. The main goal of this study was to assess the impact of NPS, assessed by means of a new specific scale, on caregiver burden.Methods: A sample of 584 pairs of PD patients and their primary caregivers was studied. Patients' NPS were measured with the Scale for Evaluation of Neuropsychiatric Disorders in PD (SEND-PD), and the Zarit Caregiver Burden Inventory was used to quantify caregiver burden. Three linear regression models were built to check factors associated with caregiver burden, one for the total sample and two for subgroups stratified by the presence of dementia. Results: The most prevalent SEND-PD dimensions were mood/apathy (87.4%), followed by psychotic symptoms (48.5%) and impulse control disorders (26.5%). Patients with dementia (n=94; 16.15% of sample) consistently presented more NPS than patients without dementia (p<0.001). On linear regression models, the main determinants of caregiver burden (for the total sample and the sample of patients without dementia) were SEND-PD dimensions mood/apathy and psychosis, PD-related disability and disease duration. For patients with dementia, the only significant caregiver burden determinants were SEND-PD psychosis and mood/apathy subscale scores.Conclusions: NPS in PD are highly associated with and are determinants of caregiver burden, and are more prevalent and burdensome in patients with dementia. Detailed assessment and specific interventions aimed at NPS could alleviate caregiver burden. Author DeclarationParkinsonism & Related Disorders is committed to proper scientific conduct and the protection of animal and human research subjects. Submission of this manuscript implies compliance with the following ethical requirements. Please affirm that you are representing all of the authors in stating compliance with these policies by checking the box at the end of this section.1. Studies with human subjects must have been conducted in accordance with the Declaration of Helsinki. All persons must have provided informed consent prior to being included in the study.2. Studies with animal subjects must have been conducted in accordance with the Guide for the Care and Use of Laboratory Subjects as adopted by the US National Institutes of Health and/or according to the requirements of all applicable local, national and international standards.3. Protocols with animal or human subjects must have been approved by the relevant local committee(s) charged with ensuring subject protection. Studies that entail pain or distress will be assessed in terms of the balance between the distress inflicted and the likelihood of benefit.4. The authors declare that the manuscript is original, that it is not being considered for publication elsewhere, and that it will not be submitted elsewhere while still under consideration for Parkinsonism & Related Disorders or after it has been accepted by Parkinsonism & Related Disorders.5. All authors have seen and app...

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“…swallowing dysfunction, or problems with nausea/vomiting. There are various challenges and difficulties faced by caregivers of patients with PD 22 . It is therefore notable that, when asked, caregivers/nurses felt that the rotigotine transdermal patch offered advantages over oral therapy in terms of caregiving efforts, suggesting that the caregivers felt satisfied with this medication.…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ and physicians’ attitudes to rotigotine transdermal patch versus oral Parkinson’s disease medication: an observational study

Sieb

Themann

Warnecke

et al. 2015

Current Medical Research and Opinion

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Objective:To provide real-world data on caregiver and physician perceptions of the advantages and disadvantages of rotigotine transdermal patch (Neupro*) versus oral Parkinson's Disease (PD) medication. Methods:Cross-sectional, non-interventional study in routine clinical practice in Germany (NCT01330290). Patients had PD with documented need for care, and had received rotigotine transdermal patch as add-on to oral PD treatment for !1 month. Caregivers/nurses and physicians assessed rotigotine transdermal patch versus oral PD medications using questionnaires. Specific questions regarding the possible benefits of transdermal application were asked and comprised questions on: swallowing dysfunction, nausea/vomiting, monitoring therapy, once daily application, application independently from meals, application to sleeping patients, caregiving efforts (caregivers only) and clinical aspects (physicians only). Each question was assessed on a 5 point scale ranging from -2 (major disadvantage) to 2 (major advantage) compared with oral treatment. Primary outcomes were mean total scores of all questions for caregivers/nurses and physicians who provided responses for !4 questions. As there are no validated tools to assess physician/caregiver preference in the PD setting, there is no reference against which the current findings can be compared; this study serves to pilot the questionnaires. Results:Questionnaire responses from 128 caregivers/nurses and 41 physicians were documented for 147 patients. One hundred (68%) patients had a caregiving family member; 40 (27%) were cared for by a nurse. Mean PD duration was 8.2 (SD 6.3) years; 136 (93%) patients were taking levodopa. Mean total score of caregivers'/ nurses' questionnaires was 1.32 (SD 0.67) and of physicians' questionnaires was 1.46 (0.32) indicating a perceived advantage of rotigotine transdermal patch over oral PD therapy. Mean scores for individual questions were in the range 1.03-1.54 for caregivers/nurses and 1.15-1.87 for physicians. When given a choice about rationale to prescribe, physicians cited pharmaceutical form (patch) in 139 (95%) cases and active agent (rotigotine) in 89 (61%) cases. Conclusion:Caregivers/nurses and physicians perceived advantages with rotigotine transdermal patch compared to an oral PD medication as add-on therapy in patients with PD; advantages were observed in aspects of medical treatment as well as in everyday situations of caregiving of PD patients.*Neupro is a registered trade name of UCB

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Caregiver burden in Parkinson's disease

Cited by 231 publications

References 38 publications

The scientific and clinical basis for the treatment of Parkinson disease (2009)

The scientific and clinical basis for the treatment of Parkinson disease (2009)

Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease

Caregivers’ and physicians’ attitudes to rotigotine transdermal patch versus oral Parkinson’s disease medication: an observational study

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