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

Klietz, Martin; Rippena, L; Lange, Florian; Tulke, A; Paracka, Lejla; Dressler, Dirk; Wegner, Florian

doi:10.1017/s1041610219000206

Cited by 17 publications

(37 citation statements)

References 36 publications

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“…Recent studies have shown that caregiver burden is an important factor related to patients' and caregivers' HR-QoL in chronic movement disorders such as Parkinson's disease (Klietz et al 2019;Schmotz et al 2017). The concept of caregiver burden is a multidimensional construct that summarizes the adverse effects of giving care for a person (e.g., financial, emotional, social, psychological, and physical) on the functioning of the caregiver (Zarit et al 1986).…”

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confidence: 99%

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

et al. 2019

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Dystonia is a chronic movement disorder that is associated with a reduction in health-related quality of life (HR-QoL) and restriction of activities of daily living. Botulinum neurotoxin (BT) improves disease-specific HR-QoL by reducing abnormal movements, postures, and pain. We examined the burden of the corresponding primary caregiver as a potential important factor for disease management and HR-QoL of dystonia patients under treatment with BT. 114 patients with focal, segmental, or generalized dystonia were recruited, together with 93 corresponding caregivers, whose burden was investigated using the Caregiver Burden Inventory. In addition, all participants were assessed for cognitive impairment, depression, anxiety, alexithymia, and HR-QoL. Only a small proportion of caregivers suffered from caregiver burden. Despite BT therapy, patients' HR-QoL was decreased compared to the age-matched general German population. Psychological symptoms, notably anxiety, and depression correlated significantly with reduced HR-QoL. Our data imply that caregiver burden emerged to be an issue in subgroups of dystonia patients. Furthermore, HR-QoL of dystonia patients is reduced even under optimized BT treatment in a specialized center.

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confidence: 99%

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

et al. 2019

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“…In the English version of the PDCB, Cronbach's alpha was 0.856 and the PDCB correlated significantly with the CBI as a general caregiver burden questionnaire [20]. In the validated German version of the PDCB, the items showed a Cronbach's alpha score of 0.80 and a significant correlation with the ZBI-22 (r 0.71; p < 0.001 as general caregiver questionnaire and total SF-36 score of the caregiver r-0.40; p 0.001) [8,12].…”

Section: Methodsmentioning

confidence: 96%

“…Caregivers were asked to complete a recently developed and validated German version of the Parkinson's disease caregiver burden questionnaire (PDCB) [12,20]. In brief, the PDCB includes 20 items on a five-point Likert scale (0 to 4).…”

Section: Methodsmentioning

confidence: 99%

“…In addition, clinical depression may occur [11]. In Germany, attention has recently been given to the situation of caregivers of PwP [11,12]. The detection of preventive factors that reduce the development of caregiver burden is desperately needed to lessen the burden that many relatives of PwP feel (see Mosley et al, 2017 [9] for a review of currently investigated interventions).…”

Section: Introductionmentioning

confidence: 99%

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Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

et al. 2020

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Parkinson’s disease (PD) is a neurodegenerative movement disorder with progressive impairments in activities of daily living. With disease progression, people with PD (PwP) need more help and care from their spouses or professional caregivers. Identifying factors that help caregivers to cope with their burden is needed to frame future interventions for PwP caregivers. Mindfulness and psychological flexibility might be factors contributing to resilience against the burden of giving care. In this cross-sectional questionnaire-based study, 118 PwP and their respective primary caregivers were included. Caregivers reported moderate burden and only mild depressive symptoms. Mindfulness measured by the Mindfulness Attention and Awareness scale (p 0.003) and psychological flexibility measured by Acceptance and Actions Questionnaire II (p 0.001) correlated negatively with caregiver burden. Data from this study indicate mindfulness and psychological flexibility are factors contributing to resilience against caregiver burden. Future interventions to reduce burden in PwP caregivers might be improved by the inclusion of mindfulness training programs.

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“…However, caregivers are important for the daily support of the patient and play an important role in ACP [16]. Further these people are significantly burdened by caregiving for a PwP [32][33][34]. In future projects, feedback from clinical use and results from scientific evaluations of physicians, patients and caregivers will help to optimize these recommendations.…”

Section: Limitationsmentioning

confidence: 99%

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Klietz

Berndt

Wegner

et al. 2020

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A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as ≥80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.

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

Cited by 17 publications

References 36 publications

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

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

Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

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